I think I may have fibromyalgia ? Please help, advice etc

Posted , 5 users are following.

For almost two years I have suffered from bloating, tiredness, nausea, headaches etc and to cut a very long story short , I ended up going private having a CT scan and recently a sigmoidoscopy as  my GP was u sure if I had severe IBS, gluten intolerance etc..I have been diagnosed with severe IBS... And now three wks ago u started having tingling sensation in my left hand, arm, dull ache, tingling on my left cheek on my fave and tingling, below my knees and feet, which on times has felt, painful..

I have been going to bed early with a hot water bottle on my hand and on my legs to relieve it..my GP has referred me to a nerve clinic..which I now, could take months ....it's just one thing after another... I have been quite stressed lately, so could it poss be that, re headaches etc 

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13 Replies

  • Posted

    The neurologist will do a brain MRI to see if your symptoms are related to any brain injuries or if you show any signs in the areas of your brain that control pain etc.

    Unfortunetly we have to wait so long for these appointments...but it is good you have started the process to get to the bottom of your symptoms.

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  • Posted

    If the Neurologist finds nothing...or takes blood work that indicates anything that is abnormal..they will then refer you to a Rheumatologist and you will have to WAIT again for that apt.
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  • Posted

    Sounds more like some sort of nueropathy rather than fibromyalgia . . .I have polyneuritis and have the tingling and burning sensation in my hands, feet, thigh . . . Hope you get a clear diagnosis soon. Not knowing just makes us worse!
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  • Posted

    Thanks all, it's just the not knowing is the worse 
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  • Posted

    Hi leesa56475 It took 10 years for me to get a diagnoses, I lost count of the blood tests and tests I had done. I saw every specialist you could possibly see. all tests came back normal. last year my gp sent me to see a rheumatologist yet more bloods and tests. when I went back for the results he said I was low in vitamind but all the bone test was fine. he did a pressure point test on different parts of the body I had the full 18. he then said you have fibromyalgia gave a leaflet on it and that was it refered me back to gp. a rheumatologist is the person who normally diagnoses fibro. your gp needs to refer you to a rheumatologist for a definite diagnoses on fibro.
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    • Posted

      I found the not knowing what was the worst, just wanted a diagnoses as to what was going on with me trouble was it took 10 years to get it, it was a relief to finally get a diagnoses. after 10 years of not knowing. You definitly need to see a rheumatologist  to get a diagnoses.take care
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  • Posted

    Cut out gluten, see if that helps, give it at least 3 months. Type in Google gluten neuro symptoms and have a read. There a lot about tingling and burning etc.

    I've read a lot about gluten when looking for my own problems and I did come across a certain disease which is to do with gluten and brain issues but I can't remember what it's called.

    With all your gut symptoms I would seriously consider cutting out gluten and dairy for a period, just make sure you eat a nutrient rich diet. Try for 3 months if it's not helping go back to eating normally. Even the tests can be wrong if you have been tested especially if you had cut out or wasn't eating much gluten at the time.

    I'm not gluten free and I don't agree with the fad weight loss part of cutting out gluten, I believe gluten containing food provides a good amount nutrients and vitamins that we need HOWEVER some people really do have a problem with it celiac and even some with intolerance which is very different from true autoimmune response but still upsets the body. The only real test is to learn all about gluten and cut it out for 3 months. I say dairy too as gluten intolerant people often struggle with dairy also.

    Good luck

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    • Posted

      Thanks for that...I haven't had coffee, bread, pasta, pastries since a yr last august, because Of my stomach, bowel issues, being gluten intolerance was talked about by my GP, and talking to a friend who is cealiac , she said it took 10 yrs for her diagnoses to be confirmed .... I felt sooo much better by not eating it and I do eat gluten free foods, but find even eating gluten free pasta and bread makes me unwell...mouth ulcers, tiredness, bloatedness, upset stomach...I have had bloods for cealiac n came back negative..although I have heard it cannot always be accurate,,, the consultant said that after having a sigmoidoscopy , he is certain i have IBS, but unless I eat normal foods for 6 wks, and then have a stomach biopsy, that's the accurate way of finding out if I am gluten intolerant...but to be honest, having a young family, I cannot face eating normal foods for that long, as I know how unwell I will be...

      but I haven't cut out diary , so I will try that...thanks again, for taking to time to respond to me 

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    • Posted

      Sorry your going through so much, have they checked for chrons disease?

      Are you taking a multivitamin? If your having gut issues it may be wise to start a sublingual multivitamin that's absorbed through the mucous membranes in your mouth.

      Theres also an ibs diet, I think it's called fodmap, you could try that. Or paleo is another diet, you don't eat any grains whatsoever on that. Do you take a probiotics/prebiotic? You could try them to see if they make a difference, I suppose they could make you worse so go careful but they may also help. You would need to get capsules form and not the supermarket drinks.

      I hope something helps you soon

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  • Posted

    Being stressed does tend to heighten or create symptoms.  Try to take it easy.  At least your getting a reasonably good check over to rule out other things...  

    I know that neck issues can cause facial, head, arm, chest and peripheral issues of all descriptions, painful and or weird...

    Go easy.. if they can't find nerve impingement, bone spurs, herniations etc  that can cause such things...  when their list of causation is narrowed and narrowing down...  summarys and conclusions after the typical Fibro checks, check out then their is only one conclusion...  pretty much..

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  • Posted

    Did your gp perscribe anything for the nerve pain in the meantime until you can get that appointment? Perhaps  a combination of ampitriptiline and massage work on your c7 could relieve some of the symptoms to a more manageable pace until you can get a diagnosis.

    i'm terribly sorry that you have suffered so long without help.

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