Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

Fibromyalgia

Mar 24, 2016 5:32 PM

Glad I found this app. I'm tracking my symptoms to show my Dr. He has had me on Amitriptyline and Pregabalin which had helped me get to sleep at night and IBS but doesn't touch the pain and sensitivity. So I have stopped and now trying diet and natural treatments. I wonder if anyone else has this condition and how they cope. ?

Mar 24, 2016 5:52 PM

How long of a list do you want? Haha! I have had fibro and CFS for about 20 years so have tried a lot of coping! Biggest things are learning to pace yourself and how to say no (especially to yourself!)
For pain there are a lot of natural remedies out there. You might start with some topical treatments, like heat, or a natural topical cream or roll on like Max Freeze or My Pain Away Fibro Cream both can be found at CVS. What types of things are easiest for you to incorporate into your lifestyle?

Mar 24, 2016 8:42 PM

Lotus7, I have fibro, sjogrens, IBS-C, and many other dx. Recently a gyn doc put me on magnesium & Senokot-S for the IBS, and my GI doc is continuing the treatment. I'm having less bloat, constipation, pain, and more normal BMs than ever in my life. My sjogrens med, Plaquenil, & gabapentin are the best relief from fibro & neuropathies. I can't take major pain killers so I deal with a lot of pain before taking Tramadol. I hope you can find methods of relief that work best for you. Hugs & prayers you do! πŸ™‚πŸ’•πŸ™πŸŒΌ

Mar 30, 2016 10:15 PM

Thanks weero. I nearly fell out with my son and his wife because I couldn't say no. They'd asked me to have my 6 month old granddaughter for a few hours. When they dropped her off they asked if she could stay the night with me. Instead of a few hours I had her for 24! I was running on empty most of this time. I'm finding it difficult to get through to my family what I am living with. My younger son said 'sounds like hypochondria to me' when I told him of my diagnosis.

Mar 30, 2016 10:21 PM

Thanks flappyslady81. I only have my gp. Tramadol is a sleeping med isn't it? I've tried co-codamol but barely takes the edge off. I've got an appointment on 12th April. By then I will have saved lots of data from this app to hopefully be prescribed something that actually works for the pain.

Mar 31, 2016 9:15 AM

Lotus7, they have it to me for severe pain days. But it does make me sleepy. I try not to use it too much so that I have it following any procedures. As for keeping grandchildren, I have mine a maximum 3 days, but she is 10 now & can do a lot for herself. When she was smaller I only kept her 1-2 days max. It took awhile but my kids finally understand & believe my struggles, after witnessing me nearly collapse at a family gathering (on my walker). Hugs & prayers your family will become more supportive & understanding! πŸ™‚πŸ’•πŸ™πŸŒΌ

Mar 31, 2016 9:22 AM

Hi I've just been reading up on this condition as I have been struggling with pain for the last 12months, 6 of those month quite intense aches and pains etc. I would like help to know if this is what I have.

I have antheritus from 2 fractures, one in my right foot/ankle joint and another servere on right leg. including a double pars defect fracture in my lower back. I've also had a few other ops one being right knee and 2 intergalactic hernias, reflux and asophigus problems. These injurys are all over 7 years old.

I have pain in the areas above but struggle all over my body with headaches, pains and numbness in hands and feet. I struggle to get comfy sometimes to sleep but seem to sleep through the night most of the time. I also do not have much energy and seemed to get tired easily.

Im currently waiting for another docs appointment and would like to discuss this all with my GP.

Any help or advise would be great.

Thanks

Mark

Mar 31, 2016 10:03 AM

I33, just letting you know I couldn't help but chuckle at the "intergalactic" hernias. Who knew hernias could come from outer space? Thank you to auto-correct! Lol πŸ˜‰

I can't say you do or don't have fibro. But we share quite a bit of symptoms, and I do have fibro. The symptoms of pain & fatigue started in 2007-2008. I could barely get through my workday by 2010, when they found a pelvic mass. Apparently it had been growing the whole time, causing irregularities in lab work. After surgery I continued to develop new dx (diagnoses) and along with FMS (2012 official dx), I have Sjogrens, hypothyroidism, GERD, IBS-C, Barret's esophagus, PFD, PCS, vein reflux, OAB, IC, and the list goes on. I have a specialist for every system of the body, due to issues with them all. Having a good team of doctors who work well together is very important. If the doc isn't a good, caring, supportive doc (with your best interest in mind for better quality health) them replace them. I do not use a lot of pain meds due to intolerances, so I cope through a lot of pain. But this community is filled with caring, helpful people (friends) who have lots of alternate suggestions, besides just meds. Start keeping a journal of pain and other symptoms: how long they last, when they start/stop, what helps, what causes to start/what activities did before, how it affects your day/night, etc. Be patient because it takes time to run tests to rule out some dx and work further in identifying what is going on. You may end up with multiple dx, like many of us. Many dx share common symptoms, so it takes time. But the community is here for you. Hugs & prayers you can get answers & a treatment plan that works best for you, sooner than later! πŸ™‚πŸ’•πŸ™πŸŒΌ

Mar 31, 2016 11:00 AM

Thanks for your advice flappyslady81, sorry was kind of rushed today (intergalactic) :)

I agree about docs and getting good ones. I will hopefully get some feedback soon.

Mar 31, 2016 12:55 PM

Well done Flappy Lady. Everything you say is so true. Ive had fibro and other conditions etc and have a specialist for each one. I do get fed up of going on the rounds though at times.

Mar 31, 2016 3:29 PM

I just got some Biofreeze and was pleased with the results for topical pain.
You might see about the anti-inflammation diet, or just cut out as much processed food as possible. Sugar is a pain demon!
Medical cannabis, such as CBD edibles and topicals are excellent. Not only for body pain but for mental pain, anxiety, and a few other internal troubles.

Remember, fibro and its treatments are different for each person. It seems we have to treat each symptom separately, and we also need to check for interactions.
We are our own advocates. The docs don't have time, nor do they care to solve a difficult puzzle such as fibro.

Mar 31, 2016 3:37 PM

Hi princess, So true,My own doctor is excellent, He always does th,e talking and suggesting but then asks what do I want and what do I think!. I dont think their are that many doctors who take our multi conditions serious enough.
Ive only joined this site a cou.ple of days ago and to be honest I was shocked that even after 20 years I fins some relief in discovering others have the same symptoms and conditons all at once as I do. THERE is so much attached to fibro and treating the condition and all the other stuff is a nightmare. And I think this is why some doctors are not convinced about fibro.
Can I askwere I obtain CBD edibles never heard of them and the Bio freeze. Id like to look into them some more. Hope you are doing ok. And Thanks.

Mar 31, 2016 3:57 PM

I got the biofreeze from my VA physical therapist, I wouldn't be surprised if Amazon had it. Also you might try capsaicin cream, it heats sore muscles. With both, be sure to wash your hands and not touch your eyes!! The biofreeze is basically an herbal rub with peppermint and other oils that help pain. It's nice! We also both use "Musce Mist" which you can buy online. It's a minty sort of spray, and lasts quite a while.

As far as medical cannabis, right now it depends on what state you live in. If your state allows it, you go to a special office and get a 'card' which may only be a letter, saying you have a medical condition that can be helped with cannabis, and names the state code. Then you take your letter and picture id to a store or "farmacy". The people there are knowledgeable and helpful, and will show you the various things they have, including ways to smoke it if you care to. Most shops have edibles and drinks, oils for skin and even to cook with! Each store has different types of things, so you might want to check a few places. There are also places that deliver!
If you've ever been out driving around your city and saw places with a green cross, those are legal "pot shops" and that means you can easily get a medical card.

Also, Google IF therapy. It's a sort of TENS machine that can help some fibro pain, especially those weird hard gel areas that can form sometimes. I had one on my upper arm for decades, and one IF treatment at home made the lumpy bit go away entirely!

I hope these options can at least help your pain.

Mar 31, 2016 4:34 PM

Thanks for the info. Its very helpful.

Apr 01, 2016 1:43 PM

Hi there I am on Duloxotine 60mg for my fibro took a little while to see a difference but it certainly is working for me now thank god X

Apr 01, 2016 1:56 PM

Hi I ve had duloxotine and god knows what else . Didnt work for me. I have morphine liquid and caps,again along with other stuff. Most. Of the time it takes thevedge ooff but really should be pain free with the amount of nrds I have.xx

Apr 05, 2016 9:30 AM

Lotus7 So sorry about your family lack of support, my mother is the worst, told me I was making it all up. Why in the world would someone live a miserable and hopeless existence on purpose for over 20 years? Almost makes me laugh the ignorance a loved one will hold on to in the hopes that they won't have to continue watching you in pain the rest of their lives and not be able to do anything about it. Can't really blame them, just move on. They will or won't move with you.
For pain I use hydrocodone. Have been for over 10 years. Bad side effect is constipation. Reacted badly to all the others I have tried, tried a lot! I use a half dose every 4 hours so the pain doesn't get a chance to build back up. Doc writes scrip for 1 every 6 hours so the amount comes out correct on the scrip but he is happy with me managing from there, says I know best. Also muscle relaxer at night for sleep. Sometimes antidepressants are used for pain, they seem to do something different that helps tone it down overall. So I take a half dose of smallest dosage available. Also keeps me from feeling weepy.

Apr 06, 2016 3:24 PM

Hi I'm on 300 mg lyrciaπŸ’€makes me sleepy and stops a bit of weekly flare ups ( still have to pace myself though) I use mj to help with pain , it's so nice to feel nothing, no pain no heavy limbs , as fibro is diff for everyone I think it's trial and error , Lyrica makes memory worse and you get eye probs , and I've herd horror story's about coming off it , I hope u find something to help with your pain , I'm on my second rhemo I had to go out of area to find a good one

Apr 06, 2016 5:05 PM

I'm lucky I had good Rheumatology consultant. I can't take any if the usual meds for fibro due to having Crohns so I'm stuck with BuTrans patches.

Ready to start relieving your pain?

Join Community