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CatchMyPain Community and Pain Diary App to manage chronic illness

anyone with fibromyalgia?

Feb 13, 2015 3:16 AM

If there is anyone in here with fibromyalgia please let me know!!!!!

Feb 13, 2015 3:25 AM

In am 32 years old and dealing with chronic pain and fibromyalgia. My dr switched me from morphine to percocet. In am getting no relief! If anyone can give me ideas on what to do I would love to hear from you!!!

Feb 13, 2015 3:48 AM

I have Fibromyalgia on top of other conditions xXx

Feb 13, 2015 7:50 AM

I'm 53 and have had various med issues since 1983. But the worst started in 2008-2009, with fibromyalgia being a sidekick. I wasn't diagnosed with fibro until 2011 and was only taking Tramadol 50 mg/3x day, until recently when I WS put on gabapentin 300mg/3x day (currently taking at bedtime only to allow body to adjust). They had me on Cymbalta for 9 months. The first 3 months were great, then it felt like I was having worse pain (side effect), and towards the last 2 mos I began spiraling down in depression, to the point of wanting to die but not kill myself (side effect 2). So for on the gabapentin at night, I sleep much better, but I'm also taking antidepressants, and sometimes muscle relaxers and/or anxiety med. I hurt all the time, and I have a high tolerance level for pain, so it takes a lot for my pain to change my moods. I have extreme allergies to most of the narc meds and other meds everyone else is using. That's why I'm slowly introducing the gabapentin to my body.

Besides meds I use Bible study, music, reading, warm showers, & computer apps to help me stay relaxed as much as possible. When I'm tense it raises my pain.

Feb 13, 2015 8:02 AM

I also meant to add, pay attention to your body. Learn what's an easier way to do something, learn & accept your limitations, and be open & honest with friends, family, and especially doctors. Rest when your body says you need it. And know you are not alone; many on CMP have fibromyalgia with at least 1-3 others issues, but most like me have 5-8+ issues. You didnt mention if you have any other issues or your age. On here the ages vary from teens to over 50.
I'll be praying for you.

Feb 13, 2015 8:05 AM

I have been diagnosed recently with fibromyalgia and restless leg syndrome. They are still checking for links to anything else. Can't seem to get the fatigue under control yet. Still have pain but not as constant, or I'm just getting to used to it.

Feb 13, 2015 8:12 AM

@ JayS77, do your feet and toes and calf muscles draw up with cramps? My doc said I have restless leg syndrome but didn't explain it.

Feb 13, 2015 9:29 AM

I have fibro and osteoarthritis, only diagnosed Sept last year but suffering with huge array of symptoms for over 2 years. Still feeling quite shell shocked by the diagnosis. In mourning for the 'old me', and largely left by the medical profession. I have bad reaction to strong medication, have to stay in bed the next day feeling sick. I have to work so tend not to use anything except paracetamol and Amitryptline. It's very lonely! Hugs to you

Feb 13, 2015 10:34 AM

Hey Lindsay- 38.5yrs old diagnosed when I was 25. Still working and trying to keep life going! It certainly is a struggle 50% of the time and pain everyday! Flares a few times a month. Welcome!

Feb 13, 2015 10:59 AM

Hi Lindsay... I'm 50 and have been in pain for over 20 years. I was diagnosed with fibromyalgia among other things. I'm sorry you're suffering with this. I will pray that there is something that works to ease your pain.

Feb 13, 2015 5:19 PM

Me diagnosed about 6 months ago was given cymbalta I didn't like the way it made me feel it helped with depression at first but messed with my head to much I'm try on to get a program for me I have been researching I'm starting tomorrow just got all my supplements I'm going to have oatmeal every morning with 2 table spoons if coconut oil through out the day I haven't got a schedule yet I will take Turmic capsule vitamin b12 vitamin D magnesium and for lunch a juice those fresh ones with greens and fruit from the juicer no more sweets nuts and dried fruits for snacks lord knows I'm praying I found the combination for me

Feb 13, 2015 9:09 PM

Tami, I pray it works for you... All of the things you have listed are all really good things to incorporate into your diet. Also, dark greens, legumes, and fresh herbs... All of which have anti-inflammatory properties. I hope that the regiment brings you relief.

Feb 17, 2015 6:33 PM

Yes 23/F and on top if having PTSD and chronic pain and neuropathy from an auto accident. Sometimes I just want I jump out of my skin. I can no longer run or really walk much without dibikitating pain and working full time feels like the end of the world. I'm working on finding a psychiatrist to help manage pain meds, birth control, talk trough all this, and manage in a healthier way. 3.5 yrs in and more lost than ever.

Feb 17, 2015 7:03 PM

Flappyslady yes sometimes my calfs, ankles, and feet cramp up. My doc was more going off the fact I get twitching in my legs at night and my wife told him I tend to move my legs around in my sleep a lot some nights.

Feb 17, 2015 7:24 PM

I'm 34 and have fibro and PTSD and osteoarthritis. The only thing that I found to help is medical pot.

Feb 17, 2015 7:34 PM

Tami4870.... Where did you get the diet info?

Feb 19, 2015 5:01 PM

I just researched and tried different things and this combo is working miracles for me and St. John's wort is good for anxiety and depression but only if you don't take any antidepressants from the dr I always check drug interactions the coconut oil and Turmic is the best if all for me I just kept a diary and did what work for me

Feb 19, 2015 6:57 PM

@Jenyfer I am at the point where I am willing to try anything. Two dr appt coming up and I am hoping it will get me somewhere good!

Feb 19, 2015 8:30 PM

Thanks JayS77. The cramps & drawing up sometimes occurs in the daytime. And its happened twice while driving, which was scary.

Feb 20, 2015 9:47 AM

I have fibromyalgia hyper mobility eds type 3. I'm 19 was diagnosed about a year ago with hms and eds and diagnosed in December with fibromyalgia. Started a fibromyalgia physio course on Tuesday to help with how to deal with it and doing well so far. I think it would be a good idea to ask your gp or specialist to refer you to this x

Feb 20, 2015 7:19 PM

I have fibro plus the basic depression/fatigue/ibs cocktail of ailments. I generally feel very blessed because right now I am getting by with lifestyle maintenance and mild prescriptions. I am flaring up win the cold weather, but I can work from home when I need to. I get cabin fever a bit, and that makes being at home worse.

Anyway, I am using the app as reminder that I do app cruelly have good days. When I flare up, it seems like I never do, or that this flare will never end. But they do end, and I have proof!

This is the first time I have said hi to the community, so hello everyone!

Feb 20, 2015 8:07 PM

Hello Stephapookie! Welcome to the community. I find it a comforting place where other people have same or similar complaints and issues. It's difficult for someone that hasn't experienced chronic pain and or chronic health problems to truly understand what we go thru.

Feb 20, 2015 8:15 PM

Welcome stephapookie. I ditto sandibeach! 🙋

Feb 21, 2015 10:54 AM

Hi Stephapookie! We're glad to have you! Thank you for reminding me that the flares don't last forever. I just had a superbad week and you gave me new hope that it'll soon be over.

Feb 21, 2015 2:51 PM

I was diagnosed with Fibromyalgia a yr ago , but I have had osteoarthritis for over 30 yrs. I also have Syringomyelia which is fluid inside of the spinal cord which causes the nerves and muscles to deteriorate. I also have sleep apena and use a cpap machine wehen I sleep, I'm also a type 2diabetic, and have high blood pressure. I thank God every day that I'm able to still walk and get around with minimal help.I tell myself it could be so much worse. God Bless everyone.

Mar 02, 2015 11:02 PM

Yes I have, worst pain ever right now.

Mar 03, 2015 7:57 AM

Welcome pantherlady! My fibro flared last week. But I'm doing a little better since Sunday.

Mar 03, 2015 9:09 AM

Welcome Pantherlady!! This is a really great community and I hope that you find the support and company that you need to help you through when you need it. We are all here for many reasons, different issues but all have one thing in common... Constant and overbearing pain. This group is really a Godsend and has helped me on many an occasion, although, I feel better when I can help others. Glad you found us.

Jul 07, 2015 9:44 PM

I have chronic pain , fibromyalgia + other issues had them for years. I'm 47 & hurt all the time pretty bad at times

Jul 10, 2015 6:52 AM

I have fibromyalgia, type1 diabetes, a pinched nerve in my back and a myriad of other crud. I have never had such a long flare up though.

Jul 10, 2015 1:20 PM

I am 22 and have had fibro since j was 16- diagnosed at 18. I've tried gabapentin but it kept me awake and cymbalta didn't deal with my depression well enough. No one will give me pain medication. I have Tylenol, tramadol (does nothing) and I've turned to weed to cope. It's incredibly frustrating.

Jul 10, 2015 1:29 PM

Me along with multiple other issues with my spine 😕 having a bad time atm really struggling 😢. X

Jul 12, 2015 5:44 AM

Weed not allowed in UK Sam22. I've suffer IBS and fibro before 2011 however got a lot worse when mum passed away Sept 2011. I've been on gabapentin since then now on 900mg x 3 daily. Other pain MEDS blah blah. Had reactors to several to can't take them. Don't work used to work in office for husband now can't. Dx also with CFS in 2012 and now recently Functional Neurological Disorder oh deep joy. Cant walk more than few steps so use wheelchair outside but try inside using walker (im 47 but feel like 80+) find this pain diary handy as I can show Dr's but also it's not as if I'm thinking about nothing else as I input once daily. Great community guys and helpful topics. I'm so tired and exhausted today everything has caught up with this diving episode my body is screaming out. Sorry your the same MrsFlossy2015
gentle hugs to all out there who need it x

Jul 12, 2015 6:07 AM

I use lyrica and cymbalta and also weed to help with the pain and tramadol and Tylenol do nothing for me either and my pain Dr doesn't prescribe anything stronger so I had to find what works for me. Hugs

Jul 12, 2015 10:20 AM

Gentle hugs for you as well Mumof3boys. I know how hard it is when your mind is willing but your body just won't cooperate.

Jul 12, 2015 10:00 PM

I have been living with pain for over 25 yrs. Just diagnosed with FM last week. Trying to wrap my head around it and all of the complexities.

Jul 13, 2015 2:09 AM

Trying to chase up a diagnosis here! Rheumatologist said that he thinks I have fibro, did more tests, and referred me back to the doctors for the results, with the instructions of what to diagnose with, and what course of action to take. Only trouble is, that was a few weeks ago, and when I phoned to speak to the rheumatology department, they said I've been discharged, but the doctors haven't received anything :(

Jul 13, 2015 3:48 AM

That's what lots do happen sarahjane when diagnosed with fibromyalgia they discharge u to ur gp. X

Jul 13, 2015 5:44 AM

Mrsflossy2015 - I went to see the Gp though, there was no letter or diagnosis on the system for him to tell me.

Jul 13, 2015 6:46 AM

What did ur gp say ?
I've just had to go as been in a bad flare with my spine + fibro ffor coming up to 3 wks of hell 😢! Has given me some more morphine and diazapam to go with my other meds. I due injections in my spine on the 21st and heard it can double your pain so safe to say I'm not looking forward to them now! X

Jul 13, 2015 8:45 AM

He said that it would be unusual for me to have it due to age and build. He said if they get a letter from the specialist they'll let me know. Xx

Jul 13, 2015 9:28 AM

Yup, sitting in work in agony right now, been waiting 12 weeks so far for a rheumatology appointment...well that's 12 weeks from my second referral as the rheumatology department said fibro is not their remit and cancel the first referral! Put on sooo much weight as a result not being able to be as active as I had been which now doctors are saying is the primary issue...No! I was ideal weight for my height when all this kicked off! It just makes me so angry that no1 can help :,(

Jul 13, 2015 10:36 AM

rj210, when you go to the doctor just make sure you let them know that you've been at an ideal weight for your height until all this happened and that you've been 6 months waiting in pain for an appointment and unable to be as active as usual. I'm sorry you're hurting so badly. I know what that's like 24/7 with no break for 22 years pain level of 8 on meds with no reprieve. It sucks. I hope you get the answers you need when you go.

Jul 13, 2015 1:46 PM

I feel these stories so much! I was diagnosed finally with Fibro in January after years and years of pain and other issues as well; endometriosis, interstitial cystitis, chronic migraines, etc... I have been in a chronic pain program since 2013 and asked to be switched from short term pain relief, in my case percocet, to long term pain relief so I could have a higher quality of life and function at work, home, etc... I was told no by my pain specialist. I needed to lose weight, get more active, cut back on the percocet, and an entire laundry list of impossible things for a newly diagnosed fibro patient to do. Thankfully this past month, my PCP let me try extended release morphine and my life is completely new! Percocet down to almost 0 from 8 a day before. I can clean house. I marched in a 4th of July parade, followed by a baseball game, bbq, and fireworks and was fine the next day! So I'm starting to lose weight because I can move again. I'm not saying I haven't had any flares, I'm cured of all pain, it's a miracle, but there is hope. Keep at your Dr.s! If you don't like the answer push for a better one, work for a pain management plan that makes sense for your life. For you to HAVE a life. You deserve a life! Spoonie love ♡.

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