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Fibromyalgia

Jul 10, 2014 4:47 PM

Is there anyone else suffering with fibromyalgia?
What do you or someone you know do to ease the pain?

Jul 10, 2014 5:15 PM

I was diagnosed with fibromyalgia a couple of weeks ago. Apart from taking medication I use heat pads and a tens machine. I rest and sleep lots. I'm waiting for an appointment with a Physio for help with gentle exercises. Rheumatologist also suggested swimming or walking as exercise will help keep the muscles loose

Jul 11, 2014 4:51 AM

I have had fibromyalgia for 20+ years.

Rest, rest ,rest that will become a swear word! But seriously pace yourself, 20 mins activity max then sit and do nothing for at least 5-10 mins, That is the hardest thing to learn. I still struggle sometimes.

Take whatever meds you have regularly and meditation is good too. I discovered neural beats meditation recently, I highly recommend giving it a try. I don't have a URL handy, but search YouTube for neural beats meditation and a few will come up.

Jul 11, 2014 6:09 AM

I am a PTA and yes I highly recommend hydrotherapy exercise. it "unweights" u meaning takes weight off yr joints while allowing for exercise movements. You should also google what's called the "spoon theory". it's a great explanation of energy conservation.

Jul 11, 2014 6:38 PM

this has been a horrible week........first time I felt like I was ready for a wheel chair. I came to church since I am crying anyway I may as well pray it through...

Jul 12, 2014 3:19 PM

I agree. pace pace pace......

Jul 18, 2014 4:23 PM

I have just been diagnosed with fibromyalgia & I use heat pads - hot water bottles - I've just bought a neck massager as my neck gives me horrific pain - so hopefully that will help with my neck - disliking that I have to pace but for now I don't have a choice

Jul 18, 2014 7:33 PM

Hi av1alicia,

I too have cryied and prayed through my pain and difficultly walking. Have you tried a pain clinic with managed narcotics ? Also, I use a TENS unit and I find that does help (only while its on, there is no lasting pain relief when the TENS unit is off )

Mak

Jul 18, 2014 7:40 PM

I have had it and various other challenges for the last seven years now. I find in addition to my large list of prescription meds that heat pads also help. I use a walking stick most of the time but if I go shopping will use a motability scooter! Pace yourself and listen to your body.

Jul 18, 2014 8:05 PM

I've found no meds that help, and most of the ones for the nerve pain (Cymbalta, Lyrica, etc) I cannot take in conjunction with my bipolar meds as they negate them. All I can do is pace myself, rest as much as I can, and work and exercise as much as I can with the pain.

Jul 19, 2014 8:13 AM

babysangle.... why do u say that about not being able to take the nerve meds due to bipolar? I am bipolar as well and had no problem with taking cymbalta. now fir me it didn't help my pain but it did not affect my other bipolar meds. there's always nuerontin as well.

Jul 20, 2014 6:20 PM

I've been using things like icy hot and Ben gay but it doesn't seem to work but I started looking into things like china gel and bio freeze. I've been using them and they have relieved the pain and they don't smell bad. I'm seeing my fibromyalgia doctor tomorrow because my pain is getting worse.

Jul 20, 2014 11:16 PM

my wife has dealt with fibro for many years. the keys for her have been regular exercise, regular stretching and constant sleep. no drugs have helped her but these three things have.

Jul 21, 2014 6:26 AM

another HUGE thing for keeping fibro symptoms at bay is schedules. sleeping same amt every day, doing same amt of tolerable activity every day, eating same time every day etc

Jul 21, 2014 5:54 PM

I love a product called Stop Pain. It sounds and looks generic, but it is amazing. I like it better than anything. I love icy hot patches too. I use the XL and they cover almost my whole back.

Jul 21, 2014 9:19 PM

I have had fibro for 3 years now. I couldn't find any meds that helped but I found a product called Austrailian Relief Mist and it saved me. other than that I've learned caffeine causes flare ups and I agree with chrismoore, exercise, stretching and sleep.

Jul 21, 2014 10:27 PM

I've had Fibro for 8years. it's taken an extremely long time to figure out what thing work for me. I use the Tens unit, lidocaine patches, compound cream, oxycodone, cymbalta, lunesta, and Amrix. the more you can exercise, the better off you'll be. you have to start with just stretching. take months to move up to a cardio program. a good physical therapist trained in Fibro should be part of your week. they know how to get your muscles to stop seizing, without putting you in great pain. you can also have a gluten sensitivity causing pain. try reducing gluten and see if that helps.

Jul 23, 2014 12:01 PM

Hi I have Fibro and bulging discs. I was referred to the pain clinic before I was diagnosed with Fibro and I was given Butrans patches 20mg, They don't really ease the pain very much for me at all. If the pain gets really bad for me I take a few Cocodamol 30's as well. I use deep heat and a Tens machine as well. My Rheumatologist is wanting to prescribe me Lyrica but I have heard horror stories of people gaining lots of weight by being on this so I am weary. You just have to try as some things that work for me may not work for you and vice versa. Some remedies I have come across are heat pads/ heat spray cold rub, tiger balm, tens machine, swimming, massagers, infra red, and of course medication.

Jul 23, 2014 12:10 PM

I was diagnosed with 'Fibromyalgia' a few years ago. Symptoms were muscle pain and joint pain almost everywhere, terrible fatigue made worse with depression, something I had never suffered from before. I tried all sorts of things to help but nothing did any good until I read a book about dairy products causing Fibro. I have to admit that since giving up dairy my symptoms have decreased to a point where I now feel more like my old self. I'm pretty sure that it is the dairy because when I started eating dairy again my symptoms returned with a vengeance. Please note that it takes a few weeks to notice any difference but you must abstain totally - no cheating or you will just be wasting your time. One other thing make an appointment with your doctor and have your vitamin D level checked, I can guarantee your levels will be very low. Hope this helps you, it certainly helped me.

Jul 23, 2014 1:50 PM

I was diagnosed with Fibro in mid Feb this year. In hindsight, I've had symptoms for probably 10 yrs but it was put down to 'life' and stress.
It's taken my Dr 6 months to finally refer me to the Pain management specialist, which is happening next week. Rheumatologist appointment in 2 weeks. I've been on Prednisone for inflammation, OxyContin 30mg morn and night and 3-4 Endone (5mg) as top up in between. I have Epsom salt baths, which are excellent, use heat packs and mainly rest. I'm yet to go to hydrotherapy, but have heard really good results from that.
My Fibro is complicated by a long term spinal injury, bulging discs and diabetes. I don't have to do much to cause lower back pain and if I push myself too far, I get burning and tingling on my neck and shoulders, very frequently. Not being able to sleep (due to Prednisone) is my biggest problem. that causes my pain levels to be higher and it's a vicious cycle.

Jul 23, 2014 4:40 PM

Jash, my doctors have advised me not to take either neurontin or cymbalta because they could cause me to have severe depression and also anxiety (which I struggle with despite meds) because of my bipolar, and they also are hesitant to give it to me because of my history with suicide attempts. With Cymbalta there is also a major interaction with the fluvoximine, and fluoxetine I take for depression and OCD, and for neurontin moderate interactions with fluvoximine, fluoxetine, and also cetirizine.

Jul 23, 2014 6:32 PM

Everyone is asking what they can do to control their symptoms but no-one is asking what actually causes it. Doctors are all to eager to prescribe drugs to mask what is going on but should be doing much more to find the root cause. Drug companies don't want us to find the cause because they are making billions out of us. No wonder none of us are getting any better.

Jul 24, 2014 9:34 AM

The majority of people I speak to that have Fibro have said that it has come on after a accident, surgery, or any other traumatic event that has happened. As well as after a stressful time in their life like losing someone, divorce etc. I don't know if that is true or not but

Jul 25, 2014 3:58 AM

That makes a lot of sense to me babymable as my Fibro came on after major spine surgery and an acrimonious divorce all within a year of each other. Your last sentence ends in but, what were you going to say?
If what you say is true and Fibro is brought on by trauma the question we should be asking is how do we reverse the effect not how do we mask it. I wish I had the answer, however, this is what we should be asking our doctors.

Jul 27, 2014 12:38 AM

It's so true, I can go into the horrible unbelievable events in my life that have been traumatizing! I'd rather not though. No one would believe it. My psychologist explained that (short story) every stressful thought we don't know how to handle there are 28 toxic chemicals released for 6 hours. adrenaline, cortisol, etc..... my body constantly has them running through it. I know have fibro!!! no reversing it. My Dr. informed me I will never have a pain free day, I will have a pain tolerable day. On vacay with my family, I'm barely having a pain tolerable day without swallowing hands full of pills. tons of Advil and non narcotics. I try so hard to save those for when it's soooo bad. like twice a day.

Jul 28, 2014 11:16 AM

I find that my wrist (right) and arm become very, very painful during and after writing, even just a few sentences. Thank goodness for computers and their keyboards! Anyone here experience the same thing?

Jul 28, 2014 6:57 PM

sounds like carpul tunnel

Jul 30, 2014 7:08 PM

I was diagnosed with Fibro three years ago, but it is assumed that I have been suffering from it for the last 20yrs (I am 30!). My parents just told me to stop being over sensitive or a 'wuss'... I actually felt really bad for them when I saw their reactions to my Fibro diagnosis :( They felt so terrible.
I have a just-turned 3yo and a just-turned 4yo so I don't get to rest as much as I'm advised to... my children still miss out on a lot though, because we stay at home all the time when I'm wishing we could go to the park or something enjoyable.
I use heat packs and mostly OTC pain relief, it takes the edge off but doesn't even come close to giving me any 'relief' haha... prescriptions are for my depression, plus Valium, and higher strength codeine... also a Magnesium spray which helps a lot but only for a very short period of time, lots of vitamins and essential oils. the Pharmacist treats me like a drug addict and so I really try to avoid going there. I hate it so much :(
I read most but not all of the above replies, and I too have had a lot of emotional trauma and severe stress in my life since early childhood and I believe emotional and mental pain always manifests as a physical illness of some sort.

Jul 31, 2014 12:21 AM

It is proven that stress damages our central nervous system. The 28 toxic chemicals that are released damages our nerves and muscles. When they say stress kills it's real! If I didn't have 2 children I would rather it kill than to have to suffer the excruciating pain. This is not living

Jul 31, 2014 3:52 AM

I agree completely. My Husband and children are my only shining lights.

Aug 01, 2014 8:15 AM

the running theory is indeed that fibro is generally caused from trauma... usually physical. not reversible...acceptance and compassion can be mire powerful than most people know.

Aug 01, 2014 7:21 PM

Worst day! Had to walk too far and didn't think I was going to make it to the car! My feet felt like cement and I could barely think to even move them.

Aug 02, 2014 4:16 AM

I've had luck with my tens when I need to sit for a long time (FYI flying a lot is awful with fibro) otherwise it's heat pads, mess and as everyone else has said - pacing myself. for me that's the hardest thing since I'm a go go go kinda person >_< ah well, forced to learn quick when you can barely walk and have to use a cane right? if only I could manage to stabilize enough to get a freaking job again! I had to leave my last one because I just couldn't keep up even part time. hurting all the time is so exhausting

Aug 02, 2014 4:27 PM

I've had FM for 4 years now, but over the last 2 years it's got dramatically worse, to the point I'm losing sensation when the pain is too much. for some reason, the pain gets so bad, my brain decides not to communicate with those areas any more so some mornings I physically can't feel my legs until the pain killers kick in. used to work full time, them part time, but I made the decision to work for myself last year, which has helped, as I find I can work a full time job, just when it's best for me. personally, I find it a lot easier to work at the end of the day, say 4pm-midnight, as the tablets are working by then, and I've had time to spend the morning in bed if tired, or stay in bed if the tablets aren't working. a short trip to the gym for 30 mins then sets me up for an afternoon/evening at work. have found it's emotionally reactive though, if I'm down (the depression gets quite bad sometimes as you would expect waking up to find you can't walk or get up) the pain and fatigue seems worse.
have just started using CMP so hoping to see if I can find any other links between my day/emotion and the outcome the following day

Aug 03, 2014 3:06 PM

I am learning so much about fibro on this app. I was diagnosed 2 yrs ago and refused to believe this catch all diagnosis. I wanted to be healed and done with this daily torture. However, it has gotten worse on top of many other issues such as arthritis, hip replacement, and a charlie horse that just won't go away. It is up the left side of my back and by the end of the day it is twisted tight. I point to my doctor where the pain is, he can't see anything. My physical therapist can feel it, when she works it out, goes to another spot, and the charli comes right back. I totally understand the feelings of pharmasist making me feel like an addict, having grandkids who live with us who are confined to the house because I just can't go anywhere. Up until 2 yrs ago, I refused to take even an asprin. Now I am so attached to these little pink bottles of toxins that I was so strongly against. Ice is my only friend as my bitchyness has driven most warm blooded people away. Thank god for my husband. I guess what I have too work on is my attitude through this whole mess. Having to say no, I can't, has driven many away. I don't usually talk about why I cant, and so they think it is just me. I am sure that talking about why will drive them away just as fast. I want to thank you all for sharing, your stories have explained much and have helped me to accept things. Now I can move on and try to learn to deal with it.

Aug 03, 2014 10:56 PM

you should look up the spoon theory. it's a great way to explain to people how you feel.

Aug 04, 2014 1:59 PM

it does make you a bit of a recluse doesn't it! whichever way you try to avoid it, the illness reduces you to days in beds, foul moods and general not wanting to go out for fear of tiring yourself more! again, my husband is my life line but it's only because I'm straight with him. he knows now from my sleep overnight what the next day will bring, often I wake feeling terrible and find he's already cleared my diary and rearranged his day to help without me asking. family don't seem to understand, worse still, they are always looking for a cure, which just doesn't exist! it's bad enough and takes long enough for me/the sufferer to come to terms with not being able to cure themselves, but the constant bombardment of family producing newspaper articles and new diet cures never ends! I know they mean to help, but sometimes it is easier to be honest and accept the facts, so I can move on and deal with the current day. fybromyalgia motto- take each day as it comes, it two halves. the morning and the afternoon. if one is rough, hope the other is better. never plan ahead, and release your impulsive side! if you are well, cease the opportunity and make the day worth it!

Aug 05, 2014 12:13 PM

so well put! Today is a good day and I'm feeling so myself. Miss it but love and embrace it for today. Now I have to remember just because I feel good not to try to do it all. Balance is a very hard thing not easily learned.

Aug 05, 2014 1:34 PM

Sweller, thx. This morning has been so bad. Mostly I miss my grandchildren. The inability to "make plans" with them, for them is so sad. I spoke to my ortho Dr's office this morning. The fact that my Dr's won't work together only makes things worse. The many test show clearly that my back is swollen. My right hip has to be replaced. As my Dr says, "not a good back, but nothing major". I feel like a lier. I have had t h e same PCP for 20 yrs. Only the last 2 have been like this. Why would I lie, leave a great job, lay in bed? Why would I stay in my room when company is here? My husband is like yours, he is so supportive. My condition is taking yrs off his life. I just can't do this anymore. I will look up the spoon thingy, thank you all again.

Aug 05, 2014 3:03 PM

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/
Here is the spoon theory. I had trouble reading it to my husband without crying, but he is so supportive, and loves every word of it.

Aug 06, 2014 8:41 PM

paceing is all I can do. I was diagnosed with fibromyalgia after breaking my neck.... it was a very hard point in my life I tried to deny the pain but through tears I realized when you just can't do what you know you need to do due to pain, spasama fatigue it's time to accept. I was under a great pain management clinic and life was almost normal again however than I returned to Tassie from the mainland and can not find a GP who will even read my specialists letters. happy to wright referrals but not receive the advice on them. hence after 5 year of managed narcotics I have just weaned myself at home by myself whilst looking after my four month old. let me tell you it is the hardest thing I have ever had to do. but after so many trips in and out if hospital a cervical operation and intensive rehabilation period the gps down here accused me of being an addict for using only 10mg twice a day a huge reduction from where I was, well below specialist recommendations and I choose to use a lower rate. but somehow the first GP I saw down here placed me on an authority program which is usually used for know abusers. I tried to fight this for 18 months. on my last visit I had a panic attack after leaving it was a real eye opener. I'm not yet to sure how I am going to manage now. I'm aching literally from head to toe and we have 6 children in our family. I very much agree with activity for 20 minutes than rest but in my situation it can be hard and I'm feeling like I'm not worthy of medical help. my partner is a dairy farmer and we live off grid I'm running out of options has anyone heard any news on the trials with HGH for fibro patients

Aug 29, 2014 7:57 PM

faithie, you are always worth medical help. unfortunately with any invisible illness it is very hard to get a doctor who will understand and help you in the way that they should, but you just have to keep trying. Everyone with any kind of invisible illness just needs to keep reminding themselves that you ARE worth it. It is NOT in your head. and it is okay to ask for help. Its the main things that help us carry on when we feel like we can't anymore. As a little fish once said, just keep swimming.

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