Fibromyalgia sufferers, I need advice please!

[JamaicanMeCrazy]

I have suffered with fibro for 8 years now, diagnosed a year ago.

I currently take gabapentin, tramadol, naproxen, ranitidine and paracetamol plus otc meds for ibs type symptoms and prn medication for my allergies and regular steroid injections.

I get some quite severe myoclonic jerks, and as I am already in a lot of pain, these make it all worse and leave me in even more pain.

I want to get help for this, but my doctors seem to dismiss it

I have other issues alongside the fibro- trochanteric bursitis and Cervical Spondylotic Myelopathy and I walk with a stick and use a wheelchair when needed (a lot more often these days )

My question is what medication(s) are you on, how has it helped you and are there particular specialists (I don't mean the specific doctors, but the department they work in iyswim) that have been useful to you and how have they helped?

I'm especially interested if anyone else gets myoclonic jerks and if you have had any treatment for them and how that has helped (or not, as the case may be)

Thankyou

JamaicanMeCrazy I get myoclonic jerks, but to be honest I just ignore them. The only seem to happen when I'm sitting or laying down and I'm extremely tired. In some ways it's handy because it forces me to go to bed early

I will ask when I have the tests on Thursday, I think I was a bit too stunned by the idea that it could be something like fibromyalgia. I've been in so much pain today, I know it sounds silly, but I'm considering going to a n e and begging for painkillers, that's how much pain I'm in.

I just remembered this thread haha, shows how switched on I am

How are you all?

Hi, i haven't had a diagnosis yet but have had loads of blood tests done, due to go back on the 6th for esr i think repeat blood test as i had one done before xmas and they sent me a letter to go back to get it repeated but ive been told i have chronic pain syndrome but was told that is fybro, im not sure how true that is, im still mobile at the minute but get pain in my muscles ( top of my arms ) had to have my hair cut short as it was reletevly long as my arms ached terrible to wash and brush it, my kneck shoulders and upper back is painfull also my knees and the pain is starting in my lower back and hips also get crushing pain in hands and feet, pins and needles and tingling, i slso have a rash on my back that flairs up terrible when the pain is at its worse.

Its getting frustrating now that the gp is not realy saying if it is fibro or not, my sister in law is a sufferer and she said classic symptoms and i should fill forms in to claim but im afraid to as i fear ill be called a lier if i go for check ups ect.

Hi I have fibromyalgia but was told it is non-inflammatory so I think u can still have it even if blood test for inflammation is neg- just diff type and changes how they treat you. So in my case they told me to stop taking NSAIDs as they are not as appropriate as other meds. Currently I take amitriptyline at night, pregablin, paracetamol, tramadol and mebeverine for IBS . I sometimes take codeine instead of the tramadol - used to take it all the time and switched to tramadol recently. It is not as strong but doesn't give as much wooziness and constipation as codeine. I have been having a big flare up for me since October- a lot of people seem to, is the time of year important I wonder?

How do you find the gabapentin jamaica ? As I used to take that and switched to pregablin as I was getting a lot of stomach side effects and cognitive ones like not being able to think of a word. Now I,m not sure if that was partly just the condition, at the time I still only had dx do non specific low back pain. I only got the fibromyalgia dx once I got to see rheumatology. The dx is on my letter as " non inflammatory central sensitisation pain syndrome with fibromyalgia like pain. The doc explained some people have more all over body pain and others have it more localised in places on their body but it's a spectrum, with same or similar mechanism behind it. I only get all over pain when very flared up or if I,m tired I get it from some noises. Which is a very strange symptom. I get PIP but I had to fight for it through appeals for a year as it takes a long time to get seen for an appeal. I get standard rate daily living , no mobility as didn't have enough points to qualify. Even though my personal experience is that my mobility is the most affected area of my life. Go figure. I didn't have the dx then, but I mentioned the possibility in the appeal meeting. I think it is worth doing but get as much advice and help as you can. I didn't fill in the original form as well as I could have. I found that my cognitive symptoms made it very hard to do the form and the appeal to a high standard. The appeal meeting was a horrid experience too but unfortunately this is how it is- I think with more support to deal with the system I could have avoided appeal but then again some people say they put all cases except very severe ones to appeal to save money, sure this is true. CAB can help, or find other advice centres near you.
I do also find doing Pilates and yoga helps. I hav a TENS machine supplied from nhs to have as another aid, and I have started mindfulness type mediation as there is a lot of research that this helps to adapt brain patterns that have become slightly abnormal as ones brain has reacted to pain and stress. I have started acting with a university group too and this really helps me lately to stave off depression.