Fibromyalgia Action UK

Awaiting blood test results to hopefully determine condition does anyone think this is fibro related

I am new on the forum but have had the tight cramping and jerky legs with horrendous pain for 9 years doc thinks it is RLS it is now affecting the thigh of left leg i also have very heavy legs the odd thing is that pain eases a little if i have any weight put on it (my little bichon likes to lay on them :-) I cant remember the last time i felt awake fully as this really disturbs sleep. I had my doc look on Monday as i was worried I might gave clot she measured with a tape and said 'no' but prescribed quinine I haven't taken it too nervous of side effects. I had blood test fri as i possibly have RA, although previous test in October came back as neg, my joints are so painful from neck to ankles and everything in between and puffy like there is fluid on joints. I am brain fogged most of the time anxious bordering on paranoia mood swings and burn up to a hot furnace at night im losing my grip cant open bottles anymore without help and feel as if i dont want to go on with all the different pain that is increasing daily i am so stiff if i sit or get up from bed i walk like a robot as nothing will move easily for a few mins stairs are laughable as i cant get down with ease my spine aches i think i need some answers after all the years of pain... I hope the blood results will tell me just what is causing this as i am only 49 yet move slower than my gran did in her 80's when i finally get moving i can walk for miles but go through hell at night because of pain not only muscular but deep within the bone too. Does this sound familiar to anyone does it sound like fibro? My legs also jerk uncontrollably mostly if recline position but sometimes on sitting. The leg pain etc for 9years the joint swelling and pain fast onset for last few months with increasing severity. Sorry this is so long but need some help i don't think my doc has taken it seriously in the past and i need answers i did have a frozen shoulder from April 2011 to october2013 was given injection by a different GP didn't work as physio said was administered in wrong area then it defrosted after one in correct place any answers please

5 Replies

Hi welcome to our community. Probably you haven't had many answers yet as everyone is out trying to enjoy the sunshine as it seem sot help the old muscles. Fibro is very complex condition so all of your symptoms could be related it sounds as though you have been to hell and back for years. I sincerely hope that the blood tests will help diagnose once and for all what is going on in your body. There doesn't seem to be a specific blood test for fibro they just try to eliminate other things that can mimic some of the symptoms. Yes with the frozen shoulder as my husband found out if the injection is given in the wrong place it is as good as useless. When the pain is bad I get very fatigued and my brain seems to shut down, I know the words I want to say in the back of my head but they just don;t want to come out in any semblance of a sensible order.A friend of mine found that the leg symptoms that you seem to have endured for years was due to a gluten intolerance. She had been woken up by cramp and restless legs and strange feelings in her legs for years and was eventually diagnosed with coeliac disease. Once she went on a gluten free diet all the leg symptoms went within 3 days. It might be worth looking at that if they can't find another cause. I don;t seem to have a thermometer, I am either freezing or boiling so start the night off with a hot water bottle that is then thrown out after half an hour as I think I am in the tropics. I also have deep burning and something that feels like electric shocks going through my back and am like an 80 year old in the morning or when I have been sitting for any time. About 3 in the afternoon it seems as though my body shuts down and every bone and muscle seems to ache and stiffen. I get frustrated that I am unable to do so many things that I could previously do with ease. My husband has to open my pain tablet bottle or any other bottle or jar so you ahve my sympathy there. Please let us know how you get on with your blood tests and we will all try and help you as much as we can. gentle hugsx

1 like

Hi fieryfairy

I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and I genuinely hope that you find it as useful as I do? it could be that you have Fibro, but I am not a doctor and cannot say for sure?

I have pasted you a link for the our mother site, FibroAction:

I genuinely hope that you can find some resolution and relief to these issues and get the answers that you are looking for and deserve. I also want to wish you all the best.

All my hopes and dreams for you

Ken x


So many people reading your post will be able to relate to the pain and distress you are experiencing. Some of your anxiety will be linked to a lack of diagnosis. I think once you have an official diagnosis it will reassure you that you're not going mad, and if it is Fibro then take heart that you have accessed this wonderful site and you won't be alone because you will have the support of so many. I have learnt so much about Fibro in the few months I have been logging onto this site, and reading the posts confirmed as true my suspicions on many things I believed might be linked to my fibro. I wish you a speedy diagnosis and in the meantime you have the friendship and support of everyone here.


You sound just like me a few years ago. Honey please seek out a pain specialist!!! It makes all the difference in the world!!! Best of luck sweetheart!!! xxxx Mitzi


many thanks to everyone for your kind replies

I feel so welcomed and have been reading your replies with interest , rosewine, I can totally empathise when you say "I know the words I want to say in the back of my head but they just don't want to come out in any semblance of a sensible order" I was so worried about this as having epilepsy and having taken topirimate for years I thought my brain fog was caused by the medication or something far worse (my gran has dementia) but I have stopped taking the meds for this as I haven't had a seizure in a few years now, but the brain fog is so awful, I am a part time student with the open university studying advanced creative writing but at times the most simplest of words fail me and I stare blankly at the page or just put a nonsense word in until my brain finally switches back into gear and I can find a similar word, then use the thesaurus. it is also embarrassing when trying to hold a conversation and I just stop and fumble over sentences. I swear some people think I am lying about half of what I say as I have to think so hard just to come up with words. I will also look into the gluten intolerance as I have been told I have IBS (basically had a camera shoved up and down where cameras should not go lol :-) ) and was told I had diverticulitis and a hiatus hernia (heartburn is hell) but my mum was dx with coeliac so I should look at getting tested I suppose, I just feel so old and worthless, getting up from a chair is painful now and I am fed up of shuffling (and being told off for overdoing things) I never could sit still ... perhaps that is why I also have RLS. Ah well if I cant laugh at myself I feel like I will go under . so very many thanks to all who have taken time to answer I wish you all the very best, hugs and happiness to all


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