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Who has fibromyalgia?

Dec 09, 2014 12:35 AM

Please answer! Anyone

Dec 09, 2014 12:38 AM

Nope but I've got a good ear if you Need to vent

Dec 09, 2014 12:42 AM

I think I have it bug I haven't been dignosed

Dec 09, 2014 12:44 AM

And I've been trying to find an answer for agers and there's nothing, I might not have fibromyalgia I might have nerve pain. I just really want to know because it's so frustrating being hopeless and not knowing what to do!

Dec 09, 2014 12:50 AM

I really want to talk to someone with fibromyalgia to work out what happens to them and whats happened to me. To help work out if I have it

Dec 09, 2014 12:52 AM

Jeswoo76 might have more info

Dec 09, 2014 6:43 AM

Hey Zam... What are your symptoms?

Dec 09, 2014 3:26 PM

Im a 13 year old female. I have had pains although my body for 2 years. I would rate the pain 7/10. I believe I have chronic muscle and joint pain. The pains are in my joints and muscles. The pains are all over my body. They mostly occurred in my feet and legs, but also my arms and back. The pains have slowly got worse. They occur everyday. Everything about them is random. They always change. It's so random that sometimes it hurts to touch and other times it doesn't, the pain moves, the type of pain changes, the intensity and where it is. It's a combination of these things at once but it changes. Pains happen when walking, running, jumping etc but also sometimes when sitting down, or not moving. It's rare that I can walk without anything hurting. Lately I feel like my left arm is very weak, (I'm right handed) and hurts when I use the muscle. I also find that roughly where my large intestine is and under my ribs gets pain sometimes. I have glasses for things at school like reading or on my iPad or looking for desk to board because my eyes have trouble focusing, don't know if related. I sit out on most pe lessons because I just can't join in. Mostly I just try to deal with it. Sometimes I have to limp. The doctor has given me supplements because I have some vitamin deficients. I also have orthotics because I have flat feet. I have been wearing them for 4 months and these is no improvement at all. I have been taking the supplements for 2 months and still no improvements. I have had blood tests, and they only show iron deficient and nothing for anything else. They don't show anything for arthritis either. I don't know how to describe the sort pain but I would say aching but the type of pain all ways changes. I get cramps when running sometimes as well. I also get a lot of cracking which is sometimes painful. It happens almost everything I move in an awkward position. Sometimes I also get tingling fingers and sometimes toes. My fingers get numb when easily. They go white then after about 10 mins they go purple then back to normal. In the shower sometimes my skin gets these weird red blotches. They don't hurt or itch. My shower is quite hot, and they only appear a my lower back and left side of my stomach. Sometimes randomly I get this weird thing where my skin feels really sensitive. It hurts to touch, even just the lightest bit. I find it hard to concentrate a lot sometimes. I just can't. I also get memory loss, just after I've thought of something or am about to do something and I can't remember it. This happens a lot, like all the time. I also get random really small muscle twitches. I normally get a small headache at the end of the day. I used to do netball and diving but have stopped because of pain. I have seen many doctors, specialists and no one knows anything. I have seen a peditrition, foot specialist, eye place for glasses, nutritionist and local doctors loads of times and nothing has helped.

Recently I've noticed lumps inside my nose. They don't hurt, but make it a little harder to breathe. I've also noticed that I feel like I've pulled all my muscles. Like I'm bruised all over. They hurt a lot doing simple things. E.g getting out of the car. And I've noticed the I have been getting bruises from doing nothing, they just appear. Or either I'm bruising really easily. They sometimes hurt and sometimes don't. On the 3/11 my hands were tingling for 6 hours. And afterwards in bed I felt like I had a dead arm. This wasn't caused anything. I've been getting lost of headaches as well. I get pulsing points randomly, recently.

I have been taking supplements and wearing orthotics for 3-4 months and I've noticed no difference. It even be getting worse.

I have all symptoms for fibromyalgia apart from fatigue, a might have it a bit, but not a lot. I also don't know if u have tender points. Please tell me if you think I might have fibromyalgia. If it's not fibromyalgia then I think it might be nerve pain.

Dec 09, 2014 7:41 PM

I'm not a physician sweetie- but you Do seem to meet a lot of the criteria. You should see a physician. They could run some tests- could be many things. It sounds like you have raynouds syndrome too- which is common with fibromyalgia.

Dec 09, 2014 7:44 PM

Have you seen a rheumatologist? They specialize in this type of symptom.

Dec 12, 2014 9:05 PM

Zam... You described most of my symptoms. I have been diagnosed with fibro, SLE (lupus) ans Sjoghren's. I agree you need to find a rheumatologist ...

Dec 14, 2014 2:10 AM

Zam, I have fibromyalgia and yes those are symptoms of it but there are also other conditions that mimic it, such as myofascial pain syndrome, vitamin d deficiency, ms, and depression, I'm being treated for all of those. You should discuss this with your family physician.

Dec 14, 2014 8:22 PM

You should def talk to your doctor and get referred to a good rhum doc. He will check for the right tender points so you will know.

Jan 03, 2015 9:47 PM

If you have 18 points of pain, these include either side of your knees (4), your wrists (2) yourelbows(2) 4 points between your shoulder blades (4), your sternum, you have Fibromyalgia, I have had it since 1989, if
F you have questions, I am also a nurse (retired) because of Fibro.

Jan 04, 2015 6:46 AM

EWriGht is correct. You also have to have other symptoms...such as irritable bowel, migraines, restless leg, etc. I will look for a like for some good information and post below.

Jan 04, 2015 11:20 AM

Do you tke tylenol for pain? One of my neices got random bruises like you described. It was her liver not processing the tylenol. Also weak blood vessels can cause bruising. There is a supplemeny called bioflavanoids. It mostly comes from the white fleshy parts of oranges, grapefruits, etc. (citrus). It strengthens thw blood cell walls and helps with the bruising.

Jan 04, 2015 1:06 PM

I have been diagnosed with Fibro. I think I have tried just about everything so if you want to hear my experience with a med or a treatment option I would be glad to share. Unfortunately I have learned that what works for one does not always work for another. It is kind of a trial. To date the only true help I get is from Bikram Yoga but it is hard to get the ambition to go even when I know it makes it a little better for a day or so. Unfortuneately I still work so I can not attend class every day even if my body allowed. Cymbalta helped me quite a bit for about 8 years but then I found out i was getting some bad effects from it. Provigil helps but is not covered by insurance.

Jan 04, 2015 1:21 PM

Zam133, Lanfair is 100% correct on the trial and error part. Everybodys bodys react differently to medication, treatments. More than anything, rule out all other issues through tests. For instance, my doctors have ruled out anurysms... tumors... heart issues... lupus... etc. by tests thus diagnosing the issues I truly have.

Jan 04, 2015 1:46 PM

I do!! I hate it too! I also have osteoarthritis in my joints, DDD, spinal stenosis, herniated L5-S1, Fibro,neuropathy, nerve damage in my left leg, and I'm only 47!!!!

Jan 04, 2015 7:46 PM

Your Dr is the one that will be able to diagnose you Zam133, a lot of illnesses may seem the same or have the same symptoms but are different treatments, what works for some not always works for others, I have Arthiritis, Vasculitis and Fibro, Lupus antibody, plus many other illnesses, most I've had from being 18months old, I'm now 27 and no better after many Drs, specialists, proffessors and different Hospitals.

My Sister is 1 year older than me and she also has Fibro, but mine and hers only have some symptoms the same, and where both on different meds so please get to see a Rheumatology Dr to be sure all the best x

Dec 04, 2015 5:02 PM

I do diagnosed 4 yrs ago, Also have arthritis, Chiari Malformation, Chronic Migraine, and PTSD/Mental Illness. In pain constantly and no assistance from doctors othwr than ineffective maintenance druga :(

Dec 08, 2015 6:29 AM

Zam- I swear that could have been me writing my symptoms!! And I have been diagnosed with BAD fibro. I do have chronic fatigue. Which makes me feel like I am wearing a lead suit.

Dec 08, 2015 5:32 PM

Zam, it all sounds very familiar to me. Especially you pain and the inconsistent moving of pain. As someone said before I'm not a dr but it sure sounds like fms with something else added in just for fun!!!
My physiotherapist was the one who made the diagnosis with me. A blood test will not show anything unfortunately. Best of luck kiddo and if you need to talk anytime there's always someone here that can help 🌼😊

Dec 08, 2015 9:08 PM

I have it I got blood test, mri, and Xray.

Dec 09, 2015 12:33 AM

You need to have your physician ruin blood tests to rule out the one that he can. Fibromyalgia is a diagnosis of exclusion, which means they diagnose it by ruling out the other stuff that can be tested for. Make sure he/she tests for Lyme disease, lupus, ra, at the very least. Then have them refer you to a good rheumatologist who will help you with the rest of the tests. They will check for "trigger points" which are the tender spots you're talking about. Fibromyalgia diagnosis comes with a certain amount of trigger points. Treatment is hit and miss, trial and error and I hope and pray that you can get a quick diagnosis and begin the trials for finding the proper medication combo. I'm so sorry that you're having to go through this, especially at such a young age. Don't let the doctor talk down to you or over you. You doing like a very intelligent young lady, but doctors and other medical professionals tend to see the age, not the IQ. Remember, only you know what you are feeling and how much pain you're in. If the doctor tries to tell you that you're too young or whatever, I know a woman with a 9 year old daughter who was just recently diagnosed. Stand your ground and if you get a doctor who won't take you seriously, get a different doctor. You deserve to be treated as importantly as anyone. I wish you luck and prayers. Keep up with your pain diary and try to keep track of weather, anything new in meals, etc so you can show the doctor and perhaps find a pattern as well. Good luck, God bless and gentle hugs 😊

Dec 09, 2015 4:34 AM

I have it, got diagnosed earlier this year

Dec 09, 2015 11:43 AM

I have fibro. Just recently got an official diagnose. I Have always been ultra sensitive to cold/hot, touch, scents, chemicals, meds, hormone and digestive issues.

I started having mild pain issues with chest ,hip, and knee since I was 18, when I had a car accident. I am now 32. About 9 years ago I started to seek answers. I had moved further north, 7 years ago to a colder and windier area which intensified and spread the pain. Doctors just thought I was crazy, kept testing my thyroid.

3 years ago I moved to our homestead. I was working at a very stressful position with long hours. My symptoms intensified again. About a year ago I had a doctor suggest fibro, but didn't give me an official diagnose. Soon after she left due to her own medical issues, and I had to start over with my current doctor. (Who so far is very understanding, and helpful)

It has only been a couple of months of so far inefective treatment for me. I spent 14 years and over a dozen doctors, in pain. I was coping with heat, diet, and activity, with just alieve for pain.

Dec 09, 2015 12:09 PM

I have pain in my left arm and shoulder. I can't touch it and I can't have a fan hitting that direction because of the pain. It also feels as if the cold air is in my arm. Does anyone else have that kind of pain?

Dec 09, 2015 12:42 PM

I get that during a bad flare or some mornings before the fog clears. It's called tactile allodynia.

Dec 09, 2015 7:46 PM

My pain in the mouth is an sore.

Dec 10, 2015 12:42 PM

I have been diagnosed with Fibromyalgia 😞

Dec 10, 2015 1:15 PM

I've had it since I was 10 yrs old so 25 yrs now. Ask me any questions. From what I read you should be tested for it and maybe going to a neurologist to with the numbness.

Dec 10, 2015 11:20 PM

Dear Zam,
I have fibro and was confirmed about ten years ago by a Rheumatoligist.
I think you are expressing your concerns very well. The information people have been sharing I think is really good. Description of type pain, where it is and when it is happening is good idea to track. I think that the symptoms need to go on for 3 months plus to be fibro. I have had horrible eye pain in the past 3 years. I have flared lately for about six months, my eyesight is very painful again, the pressure is horrible, light sensitive, slow pupil reaction and changes in vision throughout the day. My eyes have gotten much worse in past three months. My optomitrist sent me to be checked by an eye specialist. MRI was done, no physical problems with my eyes. The optomitrist has changed my prescription 4 times in past 3 years before this flare. One doctor thinks that it is the nerves around my eyes that are being effected by fibro.
Take special care of yourself at this time. You are important.

Dec 10, 2015 11:35 PM

How have your physical problems changed the way you do you everyday activities. Do the seems on your clothes hurt you, can you get on and off the toilet ok, put your socks, underwear, pants on. Your activity in Phys. Ed has change in what way. Are you bothered by temperature, how do you sleep, do you wake up rested, or up in the night to turn your body positioning. Some ideas to bring forward to doctor. Keep on marking areas of pain on this app.

Dec 11, 2015 4:37 AM

RavenRose- that is my name also..saw it and thought it was one of my own. I have Fibromyalgia, diagnosed just this year although I have had problems all my life. I was lucky to win my SSI appeal hearing based on it. I am about to have major surgery next month and I am scared that its gonna be a bad recovery because of my fibro. I have great doctors but had to go through hell to be able to get to this point. I am 47 years old and a grandma who can no longer really play with my grandkids as I can barely walk anymore.

Dec 12, 2015 4:07 AM

Well you seem to articulate your symptoms very well. I have had fibro for 23 years now. All the advice already offered is wonderful, all I would add is listen to your body it telling you something, don't let others try to tell you how or what you feel..ignore those who don't believe you and push on. Love and light moshell

Dec 21, 2015 12:44 AM

Eriksmomma68,what is DDD?

Dec 21, 2015 2:31 AM

Thank you amandamiddleton1234.

Mar 03, 2016 2:14 AM

Hi zam123 I am no doctor but your symptoms cover several medical diagnosis. Have you seen a rheumatologist before? Have you discussed it with your parents. I also suggest that if anyone suggests remedies run them by your doctor before trying. I have fibromyalgia and many other pain issues. Good luck i will pray for you and hope it is just growing pains.πŸ‘’

Mar 03, 2016 4:44 AM

I have fibro and yes it is tough to explain. I have pain everywhere. I also have TJMD jaw problems, adhd, chonic back pain, periphial artery disease, vericose vein, concentration issues, herpes simplex 1(mouth sores) and now a frozen shoulder.
I have to balance my medication with the activity i can do. Some days i stay in bed couse it hurts to move. Most days i sit in my recliner. Its 530 am i have been trying to sleep for 4 hours. Past 3 days i have slept from 7am to 1pm. Let us know how you are you posted over a year ago.

Mar 03, 2016 6:02 AM

I have had FM for over 16 years and each year it gets worse. All the things you listed above unfortunately just are a few of the things that come along with it.

Mar 03, 2016 4:31 PM

I have it FM and DDD, Mitral Valve prolapse. I had left knee surgery ete. Etc.

Mar 18, 2016 10:32 PM

Yeah. It has me too. Currently caught in the Crux of a network but it's getting harder and harder every week sometimes by the day

Mar 19, 2016 6:29 AM

I have fibromyalgia too. You seem to have plenty of symptoms and could have fibro but it is worth checking on some other things first. Follow the advice so many have given you already and remember to articulate everything to your doctor, or write it down for them to read. Any doctor worth their salt will pick up in key things and have them investigated.
I wish you all the best and hope you feel much better today.

Mar 20, 2016 4:09 AM

I hawe it

Mar 20, 2016 4:39 AM

I have had fibromyalgia for 10 yrs & yes i would say you could have it all you are saying meets the symtoms go to doc & get an appiontment with a rheumatologist he will put you throw alot of tests it took almost a whole year as they have to rule out alot that it could be then they can start medication i no what it feels like terrible when you are in pain 24/7 ache from top to toe & never eases i hope you get help soon xx

Mar 20, 2016 9:49 AM

I am diagnosed with it about 10 years now but just one of numerous issues i have.

Mar 21, 2016 5:11 PM

I do.

Last week I started a 4 week 2times/week class. Education and pool for fibromyalgia.


Mar 22, 2016 1:29 PM

Yes, I have it too.

Wow, Beets you must have really good insurance. I'd never heard of a class and pool like that. Keep us posted.

Mar 22, 2016 9:45 PM

I am glad to. I will share as I continue my classes. I am fortunate because it is covered under our provincial plan. It is a matter of finding out that these classes or support groups are available. There is no one cure. It is chronic, forever. What may help one person may not work for another. The Arthritis society is a good resource. Even if it is now really becoming apparent that it has more to do with our brain and how our body reacts to pain, just like with chronic pain. That is why pain medication is not working for me. An example could be people that have had their limb amputated but still can feel pain in a limb that is no longer there. The pain is there but it is being felt by the brain.

In the pool there is less resistance.

Otherwise as a part of my wellbeing, I started going to a therapeutic pool at a gym a couple months ago. I could not move. In the pool I am at a stretching level because the pain and stiffness were so bad. I deteriorated big time this past fall. I try to go 3 x per week. $57/ month Canadian for the gym.

I will keep you posted :)

Mar 22, 2016 11:22 PM

You sound like you have fibromyalgia or possibly even ehlers Danlos syndrome are your joints hypermobile at all? Certainly worth getting checked out and the tingling in fingers and feet could possibly be Raynaud's disease. I have fibromyalgia my kids are diagnosed ehlers danlos syndrome I'm being looked into it now so high chance I do. I feel for you suffering at such a young age I hope you can get the right help

Mar 23, 2016 2:36 AM

Thank you for the info. Checking resources now.

Apr 21, 2016 10:55 AM

Was misdiagnosed when I was 15 then diagnosed correctly 2009. Today I am 47. Meds do not work for me and with new restrictions of pain meds all I can take is 800 mg of ibuprofen. Daily life is a struggle. I have just applied for disability.

Apr 21, 2016 11:01 AM

Oh dear. Where do you live? I'm in UT and go to a pain clinic. I get non OTC meds from them and my PCP.
I was taking high doses of otc meds too, but worried they'd ruin my liver & kidneys.
Maybe check with your PCP about this?
Best wishes & gentle hugs.

Apr 21, 2016 11:55 AM

When did the new restrictions take effect? I have been fighting pain meds but seem to have no issues getting them

Apr 21, 2016 10:26 PM

They tell me I have both CFS/ME & FYBROMYALGIA. I tried gabapentin on a high doseage foe awhile but didn't seem to help. I take tumeric now for information as well as 300 IU vitamin D ,10200mc B12 & some other vitamins, magnesium at 300mg/day does help. Next week I got to the ICCS clinic here in Fall River for my first introvenous magnesium injection, a bit nervous but will try anything at this point.

Apr 22, 2016 12:39 PM

I have just been diagnosed and have pain all over my body irritable bowel and bladder depression anxiety insomnia sometimes because of the pain sometime because I need to use the bathroom up to 7 times a night. I have felt like this for a long time and had a fall on the 12th Feb and I can only just move around normally not to mention the fatigue and brain fog xx I hope this helps in some way 😊

Apr 22, 2016 2:08 PM

I've been dealing fibromyalgia and fatigue syndrome for more than 3 years, but the last years started to get worse. It is not easy and sometimes no one will believe what your going thru. First see a rheumatologist and start from there. Be strong don't give up we are all here for you sweetie. May our father in heaven heal you and give you the strength that you need.

Apr 22, 2016 4:43 PM

I have it for several years now worse now though

Apr 23, 2016 12:32 AM

I have many of the symptoms you're showing. I don't particularly agree with jesswoo about having to have those symptoms to be diagnosed with fibromyalgia. I don't have any of the symptoms she mentioned, but I have been diagnosed, and I am being treated with cymbalta and was told that exercise and good sleep habits should be the most helpful thing for me aside from medication. I experienced pain from the end of high school up until I was 26 before I was finally diagnosed. If you have seen many doctors, my advice would be to find a doctor that specializes in fibromyalgia. I found a family doctor who ruled out any other possible diagnosis by blood testing me. I felt pain in the pain point areas, but since I already feel pain and soreness all over, I didn't particularly feel much of a difference when she touched different points. But by beginning the treatment and ruling everything else out, the diagnosis made sense to my doctor and to me. The cymbalta is helping me, but everyone really is different. My friends mom has fibro also, and takes cymbalta to function better. I was going to ask about that medication, but the doctor suggested it before I could mention it. I'm glad that I found a slight solution to my problem and a diagnoses. I experience pain in different areas, but mostly in my back and under my ribs, my neck and the pain is a little weaker in my arms and legs. It is hard always holding my arms up to my computer at work. I do get numb hands or feet easily, especially when holding a phone or steering wheel for a long time. I experienced a lot more severe headaches before cymbalta, I still have them occasionally, and sometimes my muscles are so tired from the day I experience a burning pain just sitting or laying down, like lactic acid right after you exercise. My muscles also twitch and spasm quite a lot from the stress of the pain, and I do get relief from going to a chiropractor regularly when I can afford it since my muscles are effecting my posture and bones. It's hard to sit up straight. My body also cracks all over. It has since I was small, but it's always increasing. I was surprised to have been diagnosed this young, but I know that younger people experience this pain. I hope you find the source of your pain soon, so that you can manage it! It will be better once you find what works for you. Hope is still there

Apr 24, 2016 7:49 PM

I have fibromyalgia, back, and knee surgery the medication my rheumatologist and pain management give me don't help I have bowel and urine problems to

Apr 25, 2016 11:25 AM

I have fibromyalgia and some of your symptoms sound like it, but also sound like you need to be tested for Lupus and Reynauds. Especially with the finger discoloration.

Apr 25, 2016 4:26 PM

I have had fibromyalgia for 21 years. I was also diagnosed with M.E, but that seems to have settled down in the past 2 + years. It's nice to know I'm not alone here

Apr 25, 2016 7:54 PM

I have decoration of the nail and dry skin around the nail and my dermatologist tested me for fungus and my rheumatologist checked me for lupus both test came out good

Apr 25, 2016 7:58 PM

Do anyone get disability for fibromyalgia

Apr 25, 2016 9:07 PM

Leolion66 IAm in the middle of that mess waiting for a court date. Yes you can, specially if yoi have something else with it and its a lot easier if your over 50, which I am not. I was denied but now have lawyer.

Apr 26, 2016 9:46 AM

I was diagnosed with fibromyalgia 14 years ago.

Apr 28, 2016 7:25 AM

I make my 50th Birthday n August

Apr 28, 2016 7:34 AM

My fybromyalgia & CFS were diagnosed 23 years ago, a dysabilty was never offered to me. I also have arthritis, back issues, IBD & a whole slew of other health issues including OCD & Chronic Depression. I live in Canada & am just 43 years old, I think my age is why our government seems to discriminate & not want to give me a disability. I don't really want to be labeled as such, however my ongoing health problems are making it impossible to do the work I used to do. Constantly being tired & not much energy doesn't pan out so well in the work force, especially if one can't get out of bed to go to work & then is half asleep with brain fog while trying to work 😬 The Canadian government needs to stop discrimination against younger people like myself who only wish to be able to do the things the rest of 'normal ' society does. Being chronically ill doesn't chose an age so why does the Canadian government. 😬

Apr 28, 2016 10:04 AM

I may have missed it in another post, but please go to the doctor, you may have fibromyalgia, but your symptoms are scarily suggestive of Multiple Sclerosis. Especially if you are having vision problems. Please go to the doctor!

Apr 28, 2016 6:11 PM

I was just diagnosed with fibromyalgia January 2015. It's the worse feeling. I just turned 47 and I feel like 87. I hope the the for all of us.

May 03, 2016 2:35 AM

I was diagnosed 15 years ago. I could have gotten disability but Es only 28. Wasn't ready for my life to be done and still am not. I am almost 42 now and the pain has increased. The worst for me is the flare ups and now chronic migraines that are dibilatating

May 03, 2016 2:17 PM

Sorry the pain is getting worse. I understand I've been in bed for 2 days with so much pain it's so hard to walk. I wish for better days.

May 03, 2016 4:41 PM

I've had pain for over 30 years -- in November 2015 my doctor said I have fibromyalgia but I am not certain that is the correct diagnosis -- I would prefer it was confirmed with tests, etc. The medicine prescribed has been helpful, so maybe she is right. I know I won't ever be pain-free (except under general anesthesia) but finally having a "diagnosis" at least gives me a starting point for getting my life together. I'll be 61 years old this month. It's about time I got my life together!

May 13, 2016 6:22 AM

I have fibromyalgia got diagnosed last year and I've struggled to get on top of my pain and drs keep changing my.medication its been hard work when I also have a 20 month old daughter to look after as a single parent but I keep going forward and I'm 27.

May 13, 2016 4:41 PM

I have fibromyalgia. I was diagnosed 7 years ago. It has gotten worse over the years. I lost my job because of the fibro fog and taking time off. Currently I am waiting for a court date for disability. I am over 50 so I pray that I will get it. I struggle with the pain everyday.

May 13, 2016 4:54 PM

Butterflies16 - I also am 47 and been diagnosed the end of 2015, am still trying to get my head around it. So much conflicting information and what seem to be a pretty dangerous bunch of drugs, had three reactions so far 😟

May 14, 2016 9:37 PM

I have Fibro. Just got diagnosed May 3rd 2016. Waiting to see a specialist before they will give me any meds. That could be a few months away. I just want a good night's sleep. Then I would be a lot happier.😌

May 15, 2016 3:59 PM

Hi Everyone, 3 years with fibromyalgia, back, and left knee surgery waiting on disability hearing

May 15, 2016 4:03 PM

Mr. Fibromyalgia will not let you have joy. Do y'all remember the song Pain and Joy LOL Mr Fibromyalgia not haven't it with Joy

May 21, 2016 3:24 AM

Hi everyone. 15 years with FMS.

May 21, 2016 6:18 AM

I do it sucks don't. I wish i had weed that would help soooo much.

May 21, 2016 3:00 PM

Hi there. Almost 25 & had fibromyalgia for about 4 yrs. It occurred after a traumatic incident and you do seem to tick plenty of boxes. I've not read through all comments as my head hurts but thought I'd reply xo

May 26, 2016 3:03 PM

I am 28. I got diagnosed in Jan 16, after struggling with it for about 3 years. This month My PIP claim got accepted, i also have Tremors, and curvature of the spine, most days are painful and exhausting but some like today are agony, Fatigue and fog wise I feel fine but my back pack is so severe I cant get up out of my chair without falling on the floor. If I want the toilet or food or drink, I have had to crawl to get to it.

I hope tomorrow is a better day, as I dont think i can cope with another day like this.

May 26, 2016 4:49 PM

I've been diagnosed with ur, but not sure if that's really what it is. All I know is I hurt all the time with no end in sight. Can't take lyrica I'm allergic and pain meds don't work.

May 26, 2016 6:52 PM

I know how you feel I get that way some days ...some are better. ...they have me in a lot of medications I have been diagnosed with fibro arthritis lupus since I was around 23 years old ....I am know 49...yrs and till this day I have not gotten any better. .some days are ...I pray you get some kind of help ....God bless

May 26, 2016 11:07 PM

Has anyone had the FM blood test? Do you think it's helpful for diagnosis?

May 26, 2016 11:56 PM

I do was diagnosed Oct 2014 and just been told I have degenerative disc disease in areas of my back too .... From the look of your symptoms I'd ask to be referred to a rheumatologist :)

May 27, 2016 10:44 AM

Yes I have it whole body stage 3

May 28, 2016 11:12 AM

I also have Fibromyalgia, and have had fΓΆr 6 years now. Im 19. Sam133 it definitely sounds like my symtoms. It took me years before I found a doctor who actually believed me and knew what it was. I hope u can found a good one. If u or anyone else with fibro wants to talk I'm here ! Would love to have a friend who knows how it feels πŸ’₯

May 28, 2016 11:17 AM

When does the pain go away to be able to sleep

May 28, 2016 11:17 AM

There's a new medicine for FM called Savella. Has anyone tried it? Good or bad experiences?

May 28, 2016 11:22 AM

I tried it ....had no luck with it ...but then again everyone is different. ...it might work for you then what it did for me

May 28, 2016 11:25 AM

Thanks. Have you tried a sleep medicine to help get you some rest? Trazodone or Ambien, over the counter Unisom have helped me before. Helps to cut the pain cycle...

May 28, 2016 11:29 AM

I have was taken off of ambient and trazodone didn't help .....the pain is so severe that I just feel like giving up ....sometimes .....I usually get about two hours of sleep. ....drinking so much medication I wonder if all those medications won't mess up our liver worse then the pain

May 28, 2016 11:37 AM

I use ambien only when i dont have to go to work or drive next day. I dont take any drugs anymore cause i feel worse taking them than not. Tylenol arthis works better for me.

May 28, 2016 11:42 AM

I just took a Tylenol and am hoping it will help. Very hard to know what is working and what doesn't because I'm taking medicines and supplements. But I wasn't doing well so have been adding more... We'll see if today is a flare or an episode. Thanks

May 28, 2016 12:33 PM

I have fibromyalgia. Have had it foe 15 yrs now.

May 28, 2016 12:34 PM

Invisiblepain28. I take save ll 100 mg twice acday. It is ok.

May 28, 2016 1:47 PM

@hil66, I too worry about liver damage. Good idea to get tested - my daughter has liver damage from a pcos medicine. I have fibro and ms with arthritis etc. Have had meds make stomach bleed to the point of hospitalization and 5 units blood, twice (years apart). @mombgp22 is it a med called save ll? I was DX with fibro 13 yrs ago.

May 28, 2016 1:51 PM

@loveEm you did a great job on your pain drawing. It looks like art. I was DX 13 yes ago. Do you get brain fog too?

May 28, 2016 1:54 PM

@Invisiblepain28 my doc is trying to get my ins to cover savella. What happened while you were on it? Was it for pain, or? I don't know about it.

May 28, 2016 1:55 PM

Sorry, last message was for mombgp22.

May 28, 2016 2:05 PM

For fibromyalgia. My insurance covers it. Yes I have brain fog most of the time.

May 28, 2016 5:01 PM

Hi there all I'm new to this site and suffer from fibromyalgia chronic fatigue and ME. I have brain fog neatly all the time.

May 28, 2016 6:04 PM

I've suffered with the pain and fatigue from Fibro for 17 years. But was formally diagnosed 5 years ago.

May 28, 2016 6:05 PM

I am taking Cymbalta which helps a little but it causes insomnia. I also take Celebrex but that is more for joint injuries related to my hyper mobility and I would like to try something else like Savell for the nerve pain. It is expensive so I am looking into it more first. Gabapentin gave me brain fog before!

May 28, 2016 6:16 PM

My doctor won't put me on savella as it has a longer list than most fibro drugs of side effects. What is helping the pain more than anything else is the fentanyl patch the pain clinic recommended.

Jun 10, 2016 7:35 AM

I was just told I have it and probably have had it for a while.

Jun 10, 2016 8:45 AM

Naomica, I'm going to share some websites (separately) that will hopefully be helpful. I started with fibro symptoms in 2007 but wasn't dx until 2012. You are among many with fibro here. But everyone in the community suffers from chronic pain. Hugs & prayers as you try to find your best coping method! πŸ™‚πŸ’•πŸ™πŸŒΌ

Jun 10, 2016 9:16 PM

I have Fibromyalgia. I was diagnosed in 2010 but I've been on the road to a diagnosis since 2001. So many doctors who had no answer or said it was all in my head. I hAve tried so many medicines and treatments. Still looking for the right one.

Jun 12, 2016 8:42 PM

Hi I have been diagnosed with fibro and lupus. I am struggling at the moment and haven't slept for 72 hrs due to pain. I have no idea what to do as docs still think it can be remedied with meds and sorting my head out. I'm sick of having to take meds that don't work and I'm a single mum with three girls. I'd love to give u positive answers but I have no idea how to deal with my pain to control. or stop it

Jun 22, 2016 2:52 PM

Yes I do and have had it since 2011

Jun 22, 2016 2:58 PM

May our Lord and savior give you the strength that you need to handle this pain! I've been struggling with pain as well. Taking Cymbalta and Gabapentin doesn't do much but helps a little. I am also taking Motrin 800mg when the pain is uncontrollable and it helps! I recommend you to get warm bath every time you feel really bad, I am helping my self with a warm heater on my back. I kno is hard, but will help if you don't stress your self as much as you can. Don't worry if you can't get things done as you use too, right now your health is more important than anything else. Talk to your family and try to read to them what you have, cause unless they informed them self well about fibro will not be able to understand what your going thru! Prayers my friend lots of prayers, God will never give you more than what you can handle!

Jun 22, 2016 3:01 PM

I have fibromigia . We believe I have had since I was very young .

Jun 22, 2016 3:18 PM

Thank u so very much God bless you

Jun 22, 2016 9:31 PM

I do and it is destroying my life

Jun 23, 2016 5:28 PM

I have fibro. Started around 2004 - 05, maybe earlier. Diagnosed in 08. Still do not have good pain control. I have been trying to get disability for 3 years, for the fibromyalgia and degenerative disk disease with herniations, stenosis, and spondylosis. It has caused me severe depression, and a hiatal hernia and esophageal spasm that feels like a heart attack when it hits, which is caused by the many pain medications. Wish I could give you positive news, but there are not many positives with this illness or with chronic pain. Try to keep moving, spend some time outdoors, and enjoy what you can, when you can.

Jun 23, 2016 7:33 PM

Keep fighting, I got my disability after 2 years, for fibro, D DD, ddj and osteoarthritis

Jun 23, 2016 7:34 PM

I have herniated discs in my neck and back

Jun 23, 2016 11:06 PM

I do on top of CRPS.

Jun 24, 2016 11:58 AM

I was kinda diagnosed with Fibro. It is genetic in my family and I had severe carpal tunnel for months and had EMG done and tested negative for it and the neurologists said it was autoimmune. Put two and two together and you have fibro. Does anyone lose there appetite when they get a flair up.

Jun 29, 2016 11:17 AM

FondOfTheNight-my appetite goes either way. Sometimes I lose it-when it's just a regular flare. But when it's coupled w my menstrual cycle, I can't stop eating- which just sucks.
My roommate loses(sp?) her appetite when I'm a flare too.
Hope the at answered your question.
Soft hugs!

Jul 17, 2016 11:47 PM

I was diagnosed in May 2015. The most important thing is that you stay on the doctor about the situation. My mom and doctors thought I had numerous unrelated issues and here I am 13 years later with Fibromyalgia, CFS, PTSD, an anxiety disorder, scoliosis, adhd, and depression. I am just shy of 30 and I feel 80 most days. I have to use a cane and feel as if my hip joints can't hold my own weight. I rarely leave my house bc of light sensitivity and hyperacusis (hearing sensitivity).

Jul 18, 2016 1:08 AM

@Zam133 hun definatly push for an app with a rheumatiod. Im no physician either but it definatly sounds like that. Ive just gotten myself an app with the rheumatiod because ive had strange symptoms for two years. Pain all over started in my hip. Cold hands and feet chronic migraines headaches and fatigue hives and food sensitivities nausea cracking joints weight gain are just some. All labs mostly normal. It can also take a couple of years to get a diagnosis. Find a good doctor who specalises in chronic illness who will listen to you and document all your symptoms. Keep pushing for your diagnosis. I did a questionair online and handed it to the 5th new doctor i found cause i was desperate. I also handed him 3 pages of symptoms and he finally told me this is what it sounds like and wrote me a referal for the rheumotoid. My app isnt until november but they have been calling trying to get me in early. I wish you luck x

Sep 04, 2016 11:19 AM

I have fibro, add, ptsd, chronic pain syndrome and a few more which I can't remember at the moment.... It sucks. But, we have to move on.
My GP is wonderful and would love to get me into a pain mngmt clinic except my insurance doesn't cover it.
I am on the max of neurontin that is safe and for the most part, it helps along with a myriad of psych Meds and muscle relaxers. That's not to say my days are perfect- there are dats (like today) where I'm curled up in a little ball of misery, but usually I can function enough to do 1 or 2 errands a day.
Soft hugs to all you out there.

Sep 04, 2016 11:20 AM

Typo. That's supposed to be adhd not add

Sep 04, 2016 2:14 PM

Flappys, you are an angel!! And a fount of superior information. Thanks for eeeeeeverything! Dx fibro 1 week ago.

Sep 05, 2016 8:31 AM

@ Silvrrry, I don't remember still these sites, not with fibro fog! Lol. Others in the community referred me to them, and I keep the search trans available in my search engine for easy access, to share with others and refer back to. I'm glad it was helpful!

@ Sapphire, I had surgery in May for hiatal surgery that had caused my GERD for over 20 years, and most recently caused cell changes in the esophageal stricture called Barrett's Esophagus (can become cancer). Since the diaphragm opening was reduced with the hernia repair, and the fundoplication was done (to angle the stomach to empty easier) to reduce the acid buildup, I've had zero GERD, stomach or chest pain symptoms. Talk to your doc about this. Btw, my EGD 1 year ago was normal except for the stricture, but this year dx Barrett's Esophagus. I'll have to be followed yearly now to make sure I don't get esophageal cancer. And I totally understand the spine symptoms & pain, because I share the same dx. It's shame so many of us have to suffer and become disabled because there's no focus in research on how to reduce & improve these issues. I'll create a post on GERD & hiatal hernia & fundoplication surgery if you want to check it out.

Sep 05, 2016 12:37 PM

I have Fibromyalgia, and while no one on this thread can diagnose you, my advice would be to keep a pain journal. Your description here us extremely detailed. Have you tried giving this description to the dr's? Sometimes I personally have found that my pain journal has been more helpful to dr's than me actually talking. I have also learned that although I may be in a room with 10 people who have Fibromyalgia we all may have different symptoms or pains. I personally know what you are talking about with the tingling in your hands and the weakness also. I have experienced that in both hands and feet, but I also have Neuropathy, which is different. So that is something you want to write down. I recently read an article about the language of pain and how to describe to our drs. I'm going to give you a website that has some great words you can use! www.edmontonnervepain.ca/education/words_words_describe_pain.html

Sep 06, 2016 9:49 AM

Katy, I clicked on the link and get an error page.

Sep 06, 2016 3:44 PM

I've had it since 1989 but I'm not to good with typing and speeling on my cell phone. I've used it all through the years and some works currently trying to improve my eating and adding supplements. I still have a hard time reading and believe I've been dealing with med. Side effects on top of my fibromyalgia. Brain fog, memorie problems short term, as well as concintration, Forget the proper word to use alot.

Sep 15, 2016 10:31 AM

I was diagnosed with fibromyalgia a few yrs ago.. I just turned 36 and have had fibro since I was 32. My grandma passed away and it was VERY hard on me I got anxiety and fibro.. it's crazy how from one day to the next your a different person. I feel 80 somedays.. I also have a inner ear disorder that I got at the same time of which makes me feel drunk most days.. it's terrible because I have 2 young kids I need to tend to. I don't take any meds for fear of side effects. I have so many symptoms.. when new ones arrive my anxiety goes into overdrive and I freak out for fear I'm dying. I hate the person I now am...I use to cry every day for mos because I couldn't understand what was happening to me but as the mos/yrs go on I'm starting to realize this is me.. might as well get use to it.. *hugs* to u and know I'm here if u ever need to chat ❀

Sep 15, 2016 2:33 PM

I have fibromyalgia

Sep 21, 2016 5:32 PM

I have fibromyalgia for 31 years now. Disabled for past 10 years. I have the ear stuff going on. Ear rinning, sounds of water, itching, pain and such. I also have been diagnosed with cronic sinus problems. Have quit smoking for 2 plus years. I've used all the over the counter ear stuff. Even peroxide helps with the pain but can cause skin irritation as well as bleached my hair. I use ear wax oils and leave in for a bit helps the ear rinning when my ear is full like that feeling. I have three girls now grown so do know what your going through. I would have to sleep while they were in school so I could function for them when they got home. I also feared dying then over time wanted it. Now I believe when it happens I will be ready and no regrets.

Sep 21, 2016 11:55 PM

Raises hand..

Sep 22, 2016 12:38 PM

I've had fibro for about thirty years now, maybe more and have seen so many specialists i lost count. But some of the symptoms you are describing do not sound like they are fibro related, not to mention I've never met a specialist that would diagnosis a 13 yr old with fibro, heck u are still "growing pains" at that age. However things like the bruising easily are concerning. Really think you need to find a specialist in your area and find out what it is

Sep 23, 2016 12:15 AM

I have fibro to. Had it for about 3 years. Only diagnosed early 2016. From what I read here I don't want this anymore! I used different meds but to sleep I use Tripilene 25mg it helps, most of the time. But the fatigue does not go away!

Sep 25, 2016 7:49 PM

Nanablue64, I have the ear problems, too. I have fibro, just dx a couple weeks ago. The ringing comes & goes. The itching inside the ear canal is about to drive me crazy. Nasty. My hands will bruise out of thin air. Woke up one morning to 2 black fingers with no injury.

Sep 25, 2016 8:25 PM

I have just been diagnosed about 3 weeks ago.. i hate it..

Sep 28, 2016 4:43 PM

Silvrrry I hope you find out why with your brusing. I remember having that problem on my legs when I was living in my mold house (house built 1985 we moved in 1995 found out the upper windows were never caulked and developed black mold and trim) me and my two youngest daughter's were showing signs of health problems my alkoholic exhusband did not beleve or just did not care. I had to make sure to get my kids into a safer home after the divorce.

Sep 28, 2016 5:32 PM

I have fibromyalgia with a pinched sciatic nerve what are some questions I'll be happy to answer them.

Sep 28, 2016 6:16 PM

Bertie - I am so sorry you are also dealing with this.

Sep 29, 2016 1:14 AM

Have been ill since I was 25. Now 57. Finally diagnosed is 2010 by then in bed 95%of time in muscle pain fatigue etc. Really hoping we can all get together for the help we all need. It should not take over 25 years of dealing with a chronic illness before a diagnosis.

Sep 29, 2016 5:46 AM

I have fibro. Am on Lyrica and tramadol

Sep 30, 2016 2:15 PM

I have Fibro too πŸ˜‘

Oct 01, 2016 8:03 AM

Both hubby and I do. I've been 20 years he's been 5

Oct 01, 2016 6:55 PM

You are so right, Annieko!!

Nov 02, 2016 9:15 PM

Zam 133....i have fibromyalgia .....i will talk with you

Feb 24, 2017 12:34 AM

If you dont mind me asking.. how old are you guys? im 33 and my Fibro is at an intense peak lately πŸ˜• xx

Feb 24, 2017 3:40 AM

Hi I'm 41 and have fibro
I have rashes pains all over inside and out
Migraines that make me feel like I'm going to loose my eye sight
Fatigue like I can't explain
Mind blanks and slurring my words and the list goes on
I was talking to a work college yesterday who has given me hope that I can turn fibro around with diet
Starting with no wheat and cutting sugars out as much as possible
I'll let you all know the diet she gives me once iv got it from her if you'd are interested ?
Hope your all having a good day

Feb 24, 2017 5:29 AM

Hi I have fibro. I was dx in 2008. I'm 59. I take Lyrica. It helps a whole lot. I still have pain of course. It doesn't help with fatigue or fibrofog. I went gluten free. It cut my pain level in half. Hope you have pain free as possible day.

Feb 24, 2017 4:34 PM

I've gone gluten free too and dairy and wheat, no wheat, no caffeine 😏! Sometimes it feels like I'm in a prison and seeing others eat whatever they please, I have to admit makes me resentful!

Feb 24, 2017 5:49 PM

I know what you mean Emerald. If I didn't have to see all the yummy food it would help.

Mar 01, 2017 10:58 PM

ZAM133 everything you described says Fibromyalgia! I've had the same symptoms and was diagnosed 13 years ago. I know a lot about Fibro. Let me know how I can help you. A Rheumatogist who can do the tender point test is who you should see. Most won't treat it though because of the shortage of Rheumatologist, and the fact that a lot of doctors don't know how to treat it, or don't want to treat this complicated disease. I think my 20 year old daughter has Fibro too but she's afraid to find out. Does anyone else have Fibro in your family? My Mom and Aunt have it. It doesn't matter if anyone does or not, but there does seem to be a genetic component. It doesn't mean you don't have it if you are the only one. I'm so sorry you have to go through this.

Mar 04, 2017 7:48 PM

Hi. I'm new here and I'm in the early stages of getting a diagnosis. It's all so confusing.

2 questions- in the onset, did anyone have issues with restless legs (AND arms) at night? Like torturous?

AND. Did you have 'almost symptom free days' followed by days you could do much of anything? Please respond. I'm going out of my mind. Just wish I had someone to talk to that had experienced all these crazy symptoms.

Thanks so much!

Mar 04, 2017 8:34 PM

@ KWmermaid I experienced really bad rls I have most of my life. When my fibro symptoms first started I had good and bad days with the bad getting more and more frequent. Finding out if what you have is fibro Can be difficult as there are many diseases that mimic it. I have half a dozen diagnoses and a lot of them have some of the same characteristics. A good start would be a physical and routine blood work. Start keeping a list of your ailments and any questions you have to take with you to the dr. Good luck. I hope you find some answers.

Mar 04, 2017 9:03 PM

I have fibro, arthritis, vertebrae fuse, and knee surgery

Mar 05, 2017 1:15 AM

Restless legs
Involuntary twitches in legs when I'm sleeping or relaxing
Sore patches is skin
Patches on my back that feel like there's a thousand things crawling inside
Not being able to get my words out to the extent I had s paramedic sent out to me and tested me fur a stroke
Complete mind blanks where I just can't think who someone is
The list is endless and I'm only just finally being given fibro as a diagnosis after a million test and many more pointless trips to the doctors
And yes there's days when it's not too bad at all and then πŸ€›it hits me like a ton of bricks and I can't even summon the energy to talk
But looking into diet and reading uo as much as possible about it is helping me

Hope your well right now

Mar 05, 2017 4:41 PM

I do and life is a challenge

Mar 05, 2017 6:34 PM

I do...and IT STINKS!!! πŸ‘ƒπŸ’©

Mar 06, 2017 9:57 AM

I have fibromyalgia and curvature of the lower spine 😒

Mar 06, 2017 4:36 PM

KWMermaid yes yes and yes. Restless arms and legs. Days where I could garden all day but then totally pay for it for a minimum of two days after.
Its a slow process wprking out what drugs work and what doesn't. Some work for others and not you its all trial and error.
Best of luck and if you need to chat you can always private message me πŸŒΌπŸ€—

Mar 06, 2017 7:27 PM

It stinks indeed! I have a hard time with my words and can't finish a simple sentence.. that fibro fog ☹️😫

Mar 07, 2017 2:38 AM

It's awful and gets me down so much
I have one good day and feel shocking for days after
The worse fog attack I have had so far was having a full week where I sounded like I'd had a stroke and I couldn't remember the residents names or even think who they were while in work which stresses me and was very embarrassing not to mention worrying
Restless arms and legs and involuntary twitches of my legs aching head to toe inside and out
Even my skin is sore to touch on a bad day
But .... the only way to deal with it is to stay positive and do as many natural things as possible
Iv said it before on here but I'll say it again
The more natural things you can find to take read up on and use
I don't drink tap water anymore I don't trust it.
Stay away from wheats white bread is a no no .. all we can do is get on with it

Better hugs being sent and I hope we have more good days then bad

Mar 11, 2017 3:53 PM

I'm not sure which is worse the fog or the pain! I'm in desperate need of a hot bath but the bath is upstairs and I can't get up them, the five day headache has its painful grip at the moment 😩 just more to deal with.

Gentle hugs to all

Mar 11, 2017 6:59 PM

Yes for 20+ years

Mar 11, 2017 8:54 PM

I was diagnosed with fibromyalgia 6 years ago secondary to Rheumatoid Arthritis. It definitely helps to arm yourself with as much knowledge as possible. I rely on my team: my Rheumy, PCP, Naturopath, physical therapist and massage therapist to keep it under control and use floating (warm water with enough Epsom salts so you are boyant- helps muscle contracture and with fatigue), blood type diet (reduces inflammation), my tens unit (pain), vitamins and supplements (d-ribose and glutathione help with fibromyalgia fog, turmeric and alpha lypolic acid for inflammation). Some people with fibromyalgia have a genetic disorder called Methylene tetrahydrofolate reductase mutation (MTHFR for short, and it is!) as it prevents the body from methylating folate and other B vitamins so that they can be absorbed. Lack of B vitamins can cause muscle and joint pain. The mutation is in the same location as many of the genes for autoimmune disease (hmmm). Anyway, it stood out for me when I was studying genetics at University and when my naturopath suggested testing me for it, it clicked for me- my dad had psoriasis and needed vitamin B shots his whole life. It didn't surprise me when I tested positive. Simple solution is taking methylated B vitamins which can be purchased at any vitamin store. I am not pain free but have gone from an 8 out of 10 to a 4 which is tolerable.

Mar 12, 2017 8:58 AM

Good info! Can any doctor order test? I have been on a B12 injection monthly since 2008 and recently got really sick and found out that I am B1 thiamine deficient. I have been on a B1 supplement since June 2016.

Mar 12, 2017 2:52 PM

Yes. Any doc can order it.

Mar 12, 2017 6:44 PM

I've been diagnosed with fibromyalgia years ago & been suffering since. I have multiple symptoms, not just pain which I found out later on, it's all connected...Great! I have also been diagnosed with many other physical disabilities and mental illnesses as well. It's been a rough road and I am not looking forward to spending the rest of my life like this. Suicidal ideation has been on my mind on and off for years. Tried A LOT of different types of treatments & Nada. Going to try an acupuncturist and have hope that it will be helpful.
It's helped in the past when I went for a year after I got into a head on collision (I was a passenger) & we were hit by some jackass that didn't stop at a stop sign when they came off the highway. Luckily my no fault car insurance covered it, so I didn't have to pay a dime.
It would be nice if there was actually a blood test to determine if you have fibro or not. Rheumatologists have said I have fibro. Tho my pain dr said it'd complex regional pain syndrome.
I see a cardiologist for other issues and he's also a Vascular surgeon. He is going to do a test on my legs to at least rule out vasular disease. So we shall see..

Mar 12, 2017 7:07 PM

Zam133, don't give up. ThEre IS an emerging test for fibro if you look at one of the other threads. It is pretty expensive and not totally 100% proven yet, but it looks indicative. Fibro is a equal sided condition, which is why a rheumatologist is looking for the tender point diagnosis. It involves more than just pain and there are usually numerous cocommitant conditions with it. The longer it goes undiagnosed, the more that normally rack up! 😁 It normally runs in families. But I was the first in my family to be diagnosed. Sleep disorders and fatigue make the symptoms a great deal worse! The best way of keeping it at bay is a steady schedule and normal sleeping and eating patterns. My daughter and son have both had migraines and fibro since they were toddlers, my sister, niece and mother did as well. A cousin died of fibro and autoimmune complications ... they all run in families. So all of this testing does have a purpose. The Iron and B and D deficiencies can make you feel like this as well and those MUST be up before a doctor will take you seriously. People with fibro are motorious for eating through huge amounts of D daily. Make sure your primary is continuing to check your levels of these and gets them in line. You sre still developing and this is vastly important! If the supplements aren't worling, make a stink with your parent! They can give you prescription ones and iron can be infused. This is mot a situation to let go on for months. Your body and brain are still developing and they can't do it properly if they are short of nutrients. They have a good case to light a fire under the doctor's ass!

Mar 12, 2017 7:29 PM

You ARE doing the right thing by keeping a pain journal and diary. The more information you can give them about where your pain is and how it changes and what seems to bring it on, the better. Link it to weather, mood, and food, whether or not uou buy the upgrades!

Mar 12, 2017 7:58 PM

For those who are asking about it. I'm 54, 55 soon. Diagnosed at 19 after 3 years of run around and years of "growing pains" (there is no such thing) back injuries, migraines, IBS, Hiatnal hernia(which isn't there according to the bariatric surgeon), high blood pressure, near sightedness, ulcer, nervous stomach, legament repair from sports injuries, broken hand from sports...this was all by 19. Oh, I forgot the pigeon toed sleeping in a night brace, hypoglycaemia,and the chronic insomnia.😜

I got my degree, had a life, LIVED, and got married, then when I had my children in my early 30's the whole house of cards tumbled. My chronic DAILY migraines and CLUSTER headaches are what kept me home and lost me my career and bankrupted my family. But it all snowballed from there.

Many common fibro meds react with the other conditions I have and for years I used benadryl as a stop gap with ambien at night to get decent sleep because for me it made a HUGE difference in my fibro flares. I can't stress enough how much heat cold and epsom salts can be your friend as well and aspercreme.

But for those over 40, be aware that ambien and especially benadryl have been linked to increased dementia risk. So that is off the table now and I am going back to guided meditation. 😴

Mar 12, 2017 8:23 PM

I do not have fibromyalgia but I do have Polymyalgia Rheumatica which is like fibromyalgia x 10 on steroids. I have recently been diagnosed with Chronic Fatigue. I have to admit I thought people made some of these illnesses up until I got them. Chronic Fatigue is baffling. What do you do to feel better? To continue to have a life? Or some quality of life?

Mar 13, 2017 9:38 AM

My biggest problem is that the fibro fog causes my mind to play tricks on me. That causes my mental health to do the forget you I am taking a break.

With everything going on in my wacky life, I have to fight to do the most basic of things

Mar 13, 2017 9:42 AM

Fibro fog is awful. When I worked I just couldn't remember all that I was supposed to do. It frustrated me and my co-workers. I eventually was let go. The Fibro caused me to have to take so many sick days and the Fibro fog combined with the Fibro made me into an unreliable employee. I knew it but was hoping it wasn't that bad. I don't blame them for letting me go. It just hurts to feel like you're losing it and so flaky.

Mar 18, 2017 9:46 PM

It's really hard to get a diagnosis from my experience it took me 3 years before anyone would listen to me!

Mar 18, 2017 9:57 PM

Unfortunately, highly unfortunately, I am a fibro patient as well as all of you. Just recently I had to quit my full-time job and give up my apartment and move in with my father at the age of 27 due to fibro. Currently i am waiting for decision for Social Security which is a huge blow to my pride. FIBRO SUCKS !!!!!!

Mar 20, 2017 2:08 PM

it took over 22 years for me to get a diagnosis of Fibromyalgia because, like you, I also had so much else going wrong inside my body. I also had pain under my rib cage on the right side, which after nearly three years of throwing up daily was finally diagnosed as gallstones. They thought removing my gallbladder would fix me, but the nausea stayed (to this very day). I'd lived with the horrible pain for years, and developed allergies to almost all pain meds (everything OTC) so mostly I was in pain every day and couldn't do anything about it. I grew to hate doctors. I finally reached a peak of pain that kept me from moving my right shoulder that drove me back to a doctor. It then took me describing key parts of my pain and failed arthritis tests to get a referral to a rheumatologist. I mentioned the joint weaknesses, the skin tenderness and the pain levels. Since most physicians won't diagnose fibromyalgia it takes a specialist, but they won't usually send you there until they have eliminated everything else.
The rheumatologist was who diagnosed the fibromyalgia and started me on a medication and movement plan.
I hope that helps. I deeply sympathize with your pain.

Mar 21, 2017 10:46 PM

Hey Zam I have fibromyalgia triggered by someone hitting me car accident 2015

Apr 05, 2017 6:31 PM

I've had it since 8th grade, it's the pits.

Apr 06, 2017 10:52 AM

For 20 years

Apr 06, 2017 11:13 AM

I have had it almost 2 years. But I suspect i have had it much longer than that

Apr 19, 2017 9:16 PM

Hey I'm all new to this I just got diagnosed 2 months ago still trying to figure things out and not get so depressed over it.

Apr 19, 2017 9:46 PM

<----------- has Fibro, Still's Disease, Myalgic Encephalopathy, DDD w/13 affected discs & 3 decaying vertebrae, IBS, and a few others..

Apr 21, 2017 3:56 PM

I was diagnosed at 22, and I am now 52. Also have chronic pain from degenerative disc and spine disease, osteoarthritis, yada yada. I have developed my own ways of coping and dealing with it, not always gracefully or efficiently, but I try!

Apr 21, 2017 6:03 PM

I've had fibro like symptoms since I was 10. I'm 17 now and awaiting a diagnosis. Pretty sure that's what it is though because my mom has it.

Apr 21, 2017 7:17 PM

I have fibromyalgia and had it for 4 years I'm 47 I've other illnesses as well which are bad I'm trying hard to cope with it but my kids have problems as well

Apr 22, 2017 8:59 PM

Ive been diagnosed for ... 7ish years. But also have major back/ neck issues so I don't really know how long.

Apr 23, 2017 5:22 AM

Hi I'm new, I was diagnosed 6mths ago, also have DDD with a broken T4 to go along with it.

Apr 23, 2017 5:25 AM

Welcome TappOut I have fibro and DDD too.

Apr 23, 2017 5:29 AM

Hi :) I also have chronic migraines that are kinda under control with 3mthly Botox injections but I have been getting the injections for over two years and as a result not getting as much relief for as long.

Apr 23, 2017 7:32 AM

Fibro is one diagnosis that I have. I've had my current symptoms for almost 4 years now.

Apr 23, 2017 11:02 AM

I have it. Just another thing on my list

Apr 23, 2017 8:06 PM

I have it.
I'm a 19 year old girl and being diagnosed for 1 and a half years

Apr 25, 2017 4:02 AM

I do!

Apr 25, 2017 10:51 AM

I was diagnosed 4 years ago after falling down stairs doctor said that what set mine off

Apr 25, 2017 2:18 PM

If anyone is interested, I admin a support group on Facebook. The group is called "Coping with Chronic Illness/Pain" and is for anyone who lives with chronic illness or chronic pain of any kind, and you're all welcome to join us there at:


Apr 25, 2017 3:41 PM

I have it. I am 23

Apr 26, 2017 12:14 AM

Unfortunately I was diagnosed with it recently.

Apr 26, 2017 11:13 AM

Newly diagnosed... glad to have a word (after 21-years of reporting).

Apr 26, 2017 11:49 PM

I have it along with a bunch of other issues. Fibromyalgia diagnosed about 8 years ago and it's still not under control. 😒

Apr 27, 2017 6:49 AM

I have Fibro too. I always thought the pain was from my scoliosis but they kept telling me it wasn't. Like many of the others I have a few other issues too.

Apr 27, 2017 11:31 AM

I do.... along other illness

Apr 27, 2017 11:45 AM

Hi. I have fibromyalgia amongst many ther things. I'm not convinced that my doctors
really know what's causing some of my issues though. It's so frustrating. Losing who I am. Or who I was at least. All I can do to keep going is to focus on the little things that I take for granted. Such as being able to walk (sometimes) and breathe and see and smell and taste etc. when I get down I remember that there are many who can't do those basic things. Then I begin to realize that I'm more fortunate than I realize. It's not always easy though. There's always stormy days. But I look forward to the days where I'm able to see the rainbow and the silver lining on my ominous storm cloud. I'm still new here but it seems to help.

Apr 27, 2017 5:51 PM

Helllo...i have fibromyalgia amongst other things and ins I have been having a flare up for going on 3 wks this is my longest it hurts to have anything on but I have my son's so I have to put clothes on ...lol yes it's very hard for people to understand they say well you look fine only if you had an he in my body you wouldn't last at all...

Apr 27, 2017 8:41 PM

I have fibromyalgia and was diagnosed at the end of 2015. I believe I have had it for at least 10 years or all of my life. I am also 47.

Apr 28, 2017 9:09 PM

I have been diagnosed by my gp just recently but I have an appointment in 6 weeks with a rheumatologist to get a "proper" diagnosis...according to disability I have to have a proper dr diagnose me...I think they just like to make things more difficult than what they need to be.

Apr 29, 2017 12:30 AM

Have had fibro since puberty. I slipped on ice in 2014 and my fibro went nuts. But it led to my diagnosis. I'm 37. I have a cane and a handicap placard because I could be fine walking into a store, but completely unable to walk out. Please go see a Dr and a rheumatologist. If you would like to talk let me know. The red blotches are nothing to worry about. It's from heat. I would respond to the other symptoms.....but my memory sucks and can't remember them. In pain now and heading into a flare. Lovely. I can't say this enough....STRETCH! your muscles will always be super tight and pull on your body causing pain. Stretch everything....every day. I stretch for 2 hrs every day and can finally run again. Take care....start stretching every muscle you have.

Apr 29, 2017 6:58 PM

Three years ago I had fusion back surgery. I think fibromyalgia was brewing for about a year, but the back surgery skyrocketed the fibromyalgia. Was officially diagnosed a year after surgery.
This winter has been brutal. The pain has been constant and on cold rainy days, I am bedridden.
Spring, glorious Spring! Feeling so much better with the nicer weather.

Apr 30, 2017 3:50 PM

I have had fibromyalgia for 15 years and after diagnosing me with everything from CFS, Depression well you probably know I was finely diagnosed with fibro. The hardest part besides the pain is having a spouse, co-workers, friends that say "It's probably allergies" or "my doctor doesn't believe in fibromyalgia" so I now suffer in silence. I am 56 and in the past 10 years have been diagnosed with Hypothyroidism, HBP, Sleep Apnea and here in the last month Kidney Disease 3b....no wonder I am so tired....but I refuse to give up....I have 2 daughter's and 4 wonderful grandchildren that I adore...

May 01, 2017 4:13 AM

Since sept 2016 diagnosed.. I'm new in the fight..

May 07, 2017 9:59 PM

I got diagnosed with it May 5 2017 so really recently..

May 08, 2017 1:58 AM

I do. It was diagnosed in 2008. But I would say had it since about. 2005ish. Didn't have insurance to get it checked out till 2008.

May 08, 2017 1:17 PM

I have had fibro for over 10 years now and I just turned 27 today...and the older I get the worse it gets....the only time i was actually pain free was while I was pregnant with my now 5 month old daughter and then it came back 10 fold once I had her....

May 08, 2017 4:55 PM

Happy birthday SickofFibro! I'm also 27 and was diagnosed in march. But I know I've had it for a while. Mine seems to be getting worse too. Especially in the last year.

May 08, 2017 6:47 PM

I do and everyday is a challenge.

May 09, 2017 5:35 AM

Yes I do and am so fed up of it.

May 10, 2017 5:12 PM

I was diagnosed with fibromyalgia over 20 years ago. At first I thought Dr's were crazy as I could do things, yes with pain but I still worked and played sports and danced. It's been a roller coaster of ups and downs. About 5 years ago I injured my back, slowly the fibro came back with a vengeance. I am not able to do any of the things I loved doing, even walking has its challenges as I seemed to develop the skill if falling lol. I do get upset about it but also know that there are many people who are in worse condition than me. I have a family I love and am thankful for that. I am no longer able to work or do many things I used to love doing. I have to "pick my battles" on what I can do or want to do, knowing I may pay for it in pain or exhaustion after. Sometimes it happens right away and sometimes up to a few days later. It sucks to say the least as friends and family don't understand. But I truly believe that I am still blessed. Some days it may not seem like it but then something really small can happen that reminds me even thru all this pain and everything else I am blessed to still be able to do something.

May 13, 2017 5:10 AM

Yup for 6 years now finally diagnosed in 2016 now needing neck surgery ohh yeh lol more lol

May 13, 2017 10:05 AM

Yes, I was diagnosed about 2 and a half years ago but I've probably had it since 2005.

May 16, 2017 12:44 PM

Diagnosed almost a year ago but most likely have had it for 20 years from a spinal injury I got as a kid. Cbd oils, yoga, sensory deprivation float tanks have been most effective so far in relieving some symptoms.

May 16, 2017 2:18 PM

I have Fibromyalgia. I was diagnosed in 2014 but was having symptoms for about 12 years before that.

May 16, 2017 5:50 PM

Had it for years but finally diagnosed this month. Starting to really affect my job. And home life. Really worried about what to do.

May 18, 2017 3:06 AM

I have fibromyalgia and everything that you are experiencing is the exact same(except for the nose). When I get a flare up nothing will stop the PAIN. I was wondering if the bruising on my legs and arms where from this disorder. I like you have not found a doctor that is able to (fix) me. I choose that word because I feel completely broken. I'm so sorry you have to deal with this at 13. Hopefully these doctors come up with a cure to this painfull horrible disabling disorder. Hang in there, you are not alone!

May 20, 2017 11:52 PM

Don't rush to get it open

Jun 02, 2017 11:04 PM

Sites like this are good for emotional support but you need to see a rheumatologist for a diagnosis.

Jun 03, 2017 3:22 AM

I have Fibromyalgia. I have had it since full blown since 2002/2003

Jun 03, 2017 8:21 AM

I do

Jun 03, 2017 10:15 AM

I'm in Fibromyalgia-limbo. No official diagnosis yet but it is "suspected"

Jun 03, 2017 10:13 PM

I'm in the same situation, I have suffered from Chronic pain for 16 yrs and been on everything from panadole to I M injections of Morphine, now on 75mg Fentenil patches and Ordine. ...which is not working ......I live in Australia and I guess rules and treatments differ from Country to country. ....where are you located ? ? ? ?

Jun 03, 2017 10:15 PM

Meant to say that I have been "Diagnosed" with FibroMyalgia, but still waiting for some more test results.......

Jun 03, 2017 11:41 PM

Hey Zan, I'm 42 was diagnosed with Fibromyalgia last year, but most likely had it all my life but no one picked up on it, I was always, "just lazy" or "slow" as far as family were concerned. After falling on wet tiles 4 years ago I have declined into a bedridden state. Hope you get some pain relief and rest

Jun 07, 2017 8:46 AM

I have. So far it's no really bad. Pain doesn't come more than 5 but most of time. I hope it will progress slowly. ✌️

Jun 08, 2017 11:29 PM

(((gentle hugs))) to you all.

Jul 11, 2017 11:34 PM

I have been diagnosed, but it all EDS, most au Drs have just learned to blame fibromyaglia- most don't even know EDS then try to disguise their ignorance. My initial GP knew it- he was better than the rheumatologist and dramatically increased my dose of meds to decrease my pain and sleeplessness. Wish they would treat me as someone who is an expert in my conditions,especially as I have lived experience. Hence anxiety with each appt as it feels like a battle.

Jul 13, 2017 1:44 AM

Im 30 and I have it just got diagnosed a month ago but know what I know now I have had it since 8 years old and it just gotten worse

Jul 13, 2017 2:29 AM

Naomi is it ok if I pm you sometime about EDS I'm just finding out about it

Jul 14, 2017 6:12 PM

I do. Have had it since February 2016.

Jul 15, 2017 4:37 PM

I have fibromiagia I've probably had it for several years but only came to start to know I had it around March of 2015 when my Dystonia started and I started seeking medical help. Started on Gabapentine and got up to 2100mg and it helped for probably a year then i became tolerant. I then got on my saving grace Lyrica, it only helped some but still noticeable till I got to 400mg I'm at now I've been lucky to not have any side effects. So mostly it helps with the whole body nerve pain. (For someone that has not been diagnosed or someone thay dosnt have it I could describe it like the pain you have in your body when you have the flu) I'm open to talking more if someone needs me. Good luck on your health path.

Jul 15, 2017 4:38 PM

OOps speach to txt sorry for grammar errors

Jul 17, 2017 4:02 PM

Zethere - I can almost guarantee that u have RSD/CRPS. Go look up www.rsdhope.org for more info. I'm not a doctor but that sounds suspiciously like how myine started 18 yrs ago

Sep 17, 2017 10:20 AM

19F Battling Fibro Alongside PTSD, Depression, Anxiety and PCOS.
Left my abuser, sadly lost my dad at a very young age of 15 (1ek prior to my 16th) so I have a few experiences that might help you to speak out.
ED, Self Harm,Bullying...
I have an instagram page you can inbox me through living_With_Fibro if that fails you can also email me at fufibro@outlook.com I'd be happy to help anyone

Sep 17, 2017 12:42 PM

I do. Diagnosed in 2010

Sep 17, 2017 12:47 PM

Diagnosed 1995.

Sep 19, 2017 6:40 PM

Hi I happen to have fibromyalgia and trust me I can't stand it I am in the same boat! So I'll join the club and conversation if you want. It would be very nice to meet someone who I can relate to on this matter and reach out to them and help them too that is what is why I joined the community to help others and myself and as for what I use, I first of all drink a lot of coffee and I eat a lot of garlic powder and garlic salt! I will use a lounge chair to watch t.v. πŸ“Ί and plenty of sun 🌞 and outdoor time. In addition I load my food with chilli/cumin powder and pepper as well I love πŸ’˜ well seasoned food and these spices those plus the TENS unit,heating pad and ice pack and silent dark room rest and rolling pin are what I will favor over most so please give ALL of those I told you a chance and you'll hit the jack pot!!!πŸ’°πŸ’°πŸ’°πŸ’°πŸ’°πŸ’°πŸ’°πŸ’°

Sep 19, 2017 6:41 PM

Yes since 2004

Sep 19, 2017 7:01 PM

Aaww this one does not sound appetizing but drink a potato smoothie! get your blender out grab 2 potatoes then peel them and cut them up and blend them with water! Don't gag, just drink within a half an hour drink 22 oz. of water to flush out the excess atropine and scoplamine you'll spend some time on the throne! But it's worth it about 1 week - 2 months of pain relief or longer measure your potato size by 1.5Γ— in cm. Per 10 bl. And length of potato of inch per foot in height!

Sep 19, 2017 7:22 PM

Please make sure that both potatoes measure to the length of inches equivalent to the height across using both potatoes and the largest one using 1cm for 25 bl.. Maybe that should kill all of the pain but just don't drive for 24 hours so you don't get a DUI!!! Potato juice and raw potatoes contain alcohol! SORRY!!! Best wishes and get well really soon and give at least a half of a potato a try!!!😎😎

Sep 20, 2017 9:45 AM

I do extremely severe and i dont know how im supposed to deal with it please reply im feeling alone dealing with this

Sep 20, 2017 9:49 AM

FUibromyalgia im in the same situation pcos severe anxiety disorder depression chronic pain plus fatigue and i just lost my beloved dad last november i could really use someone to chat with got away from one abuser and now trapped in another abusive marrige!

Sep 25, 2017 6:10 AM

I have it plus a lot more.

Sep 26, 2017 11:13 AM

I was diagnosed in December. Doctors are a joke. RA doc told me to take ibuprofen or tylenol for pain. Exhausted everyday and I'm tired of being tired. I get enough "sleep" , but my body doesn't seem to think so.

Sep 26, 2017 4:19 PM

I'm in too much pain to stand long at work.

Sep 26, 2017 11:22 PM

I take lots of stuff supposed to help with pain some being narcotics. I have been on too much and too little. Right now I am just trying to supplement vitamins, and natural meds. I have had pain for 24 years or more in all honesty I have lost track.

Oct 08, 2017 6:22 PM

I have fibromyalgia and hate it and life. Unfortunately i have several mental health issues which are intensified as a result if the fibro.

Nov 08, 2017 9:08 PM

I don't have a diagnosis yet but all signs point towards Fibromyalgia. I have had tests to rule out other causes, but I haven't brought up my theory to my doctor. I fear he won't believe me or that I am crazy. I experience wide spread soreness, and exhaustion all the time. I get frequent more intense boughts of pain in some areas.I have been like this for nearly a year.

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