Need some advice from those with lived experience

Hi and thank you for your reply and I am sorry It has taken me so long to respond I have been struggling to log in all day.

and thank you for answering me straight outright that's what I need right now.

in terms of pain appointments. I have been under the pain management team for a few years now. having had previous mri and other scans for disc herniation in my cervical spine which had root nerve impingement. but I always had chronic pain issues that could not be explained they just put it down as neuropathic pain and medicated . they gave me steroid injections to treat the nerve pain but it never worked they also gave me some trigger point injections. again same problem . over the last few years I had some success with exercise and helping with some of my pain but its always been persistent but no one would ever put it down as fibromyalgia because I have osteoarthritis in my neck lower back knees ankle big toes elbows too . anyway around November last year I was walking on my treadmill and my abdomen became so itchy I've never experienced anything like it and it stuck around for a few days to begin with and I thought to myself its just stretch marks being itchy from exercise. move forward and I developed a prostate infection twice followed by full bodied folliculitis strep throat and bacterial cellulitis and was on antibiotics I've only just finished another course in the last few days. but during this time this prickling burning sensation in my skin and what felt like insects crawling through my skin wouldn't stop and I developed really aching tender legs near my knees and suddenly I had chronic fatigue doctors ran 2 lots of comprehensive bloods to rule out other issues other than my usual thyroid issue which is underactive again but only very slightly and very minor vitamin D deficiency all was good. but I have tender points near my elbows on the inside of the arm my upper back and neck headaches that hit out of nowhere burning feelings in my skin. then march 7th I thought I had carpal tunnel as my muscles between 2 of my fingers were twitching. thought nothing of it really but again move forward and its in multiple places in my body sometimes my abdomen my left forearm tricep/bicep eyelid face back muscles but stays in my right hand a lot. I have read about benign fasciculation syndrome also that some people with fibromyalgia do twitch but I don't know to what extent and my anxiety is through the roof because of ALS motor neuron disease.

in my case currently I do feel weak but doctors have seen me and tested all 4 limbs and strength test and hit me with the hammer and have said all is good there but the fasciculation they don't have an answer for it could be a fibromyalgia thing but they also said it could be ms too. I have been checked for this in the past and was given the clear. I've been told the weakness is subjective because I have no clinical weakness signs. I do get tingling burning numbness but its not constant and I have had days where I feel normal again and others where I'm ok then it feels like a train hit me and I am struggling with energy.

I'm sorry for such a long reply but I felt it best to get it all out there and if you reply you can pick what to reply to.

at present all truth be told I'm extremely scared because I don't know whats happening to me. I've gone from an active person I used to do a lot of weight lifting to the state I'm in now which is constantly tired in pain whether its my knees lower back headaches my tmj when I eat and miserable any help and information anyone can give me that might help would be everything to me

Hi David,

I used to work in the Pharmaceutical industry, a long time ago now and was always busy with work, being a single mum after getting divorced and i use to go to the gym 5 nights a week even if i was away from home, just to give you a bit off background, so constantly on the go, even weekends, with mum things.

When i ended up in hospital for 5 weeks, i was told by my pain consultant that one quick and easy way to diagnose Fibro was to cut your body into 8 quadrants, 4 front and 4 back and if you had excessive pain which has lasted longer than 6 months then you had fibro. The problem is that many Doctors refuse to recognise that Fibro is real and that it causes significant problems, unfortunately i have come across a few in this life and my previous working life.

As Fibro is a syndrome as you will have been told there are a heck of a lot of things that can be attributed to it.

As for your twitching that is totally normal in Fibro and can be minor to extreme, rest leg syndrome is also part of fibro, i like you twitch all over, and take a medication that does help with that, mainly at night but as it is in your system it does help during the day.

thank you for responding again and sorry for my lack of reply . I took my girls to Derbyshire dales for a few days in an empty glamping site to try and de stress. not too sure it helped at all to be honest.

I'd like to reply in part to the twitching again first if thats OK. with the twitching does it tend to have a few places it stays in and only affects those muscles of that area. my reason for asking is I have distinct areas that are predominantly affected on a daily basis. my right hand between thumb and index finger and then between index finger and middle finger. it mostly just affects the muscles in between but will at times cause my finger/s to twitch and move same with the thumb. also above both my knees in the thigh tend to be an area where it gets me and left arm around bicep/tricep and that area. now the only one I can guarantee is daily is in my right hand the others may not happen for a day or only happen after some kind of activity whether that be walking squatting ect so it seems if I put stress or strain on those areas my body will start twitching them. but it has also in the last couple of days started affecting my tempromandibula joint . I've have tmj for a long time as it is. I'd say around 6 years now but its been fairly dormant and now it hurts all over again.

I've noticed especially the last 3 maybe 4 nights the restless leg issue or being woken up due to some kind of pain be it shooting pain in my legs or aching cramping feeling elsewhere has been particularly difficult. sudden pains that come really hurt then go just as quick as they came too. along with hot flashes although I've had those on and off now for about 2 years just not this bad. and sudden sore sensitive skin with numb hands that come and go too. it also seems that my anxiety levels are far higher than they have been previously enough to have woken me up twice telling me it was MS or Motor neuron disease even though I had just been dreaming I found myself awake at 3 in the morning having palpitations and that dreaded feeling from anxiety in my chest and stomach.

I also have had trouble with really cold fingers and toes like if I was to touch a cold drink both hands became cold and so did my toes with no explanation as to why.

I've tried looking online for as much fibromyalgia information I can find to help ease my worries but its either really varied and I find myself umming and arring over if thatw really whats going off with me or I find myself saying no thats not me . but the more I think about it with a lot of it , it does seem to be.

at the moment my biggest worries are these twitching and this feeling of almost weak heaviness in my arms even though I still have the strength there to do things with fair ease it still feels like I'm wasting away almost.

I missed my telephone appointment on Monday with the pain clinician because of poor signal and when I called back I got told they wouldn't speak to me now for another 2 weeks even though I was scheduled to be spoken to on that day with no specific time given. and that appointment was given as an emergency due to these new symptoms and my worries about the worse case scenarios I was fobbed off with well you knew you had an appointment today so I was left very disheartened and also then worrying because I hadn't been able to talk through the issues with the very people that know about them all.

are there any things within what I have said that you haven't seen within fibromyalgia. I am finding very much like you that doctors are very reluctant to really pay attention or rather give it the time of the day it very much deserves

thank you again

dave