Trying to find out what's wrong with me - Fibromyalgia Acti...

Fibromyalgia Action UK
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Trying to find out what's wrong with me


Hi, just joined.. After some general advice. Since I was 16/17 (25 now) I began with symtoms.. Slowly but surely I now have a huge list.. I think I've included everything, but no doubt I will have missed something..


Tired 80 % of the time



Pains in finger

Ringing in ears / ears go funny





Majority of back

Sides of hips / thighs / bottom really ache and throb, in the night constantly toss and turn with the pain

Pain in hips

Hurts when scratch / touch body mainly legs arms back, chest

Head aches

Very painful heavy periods with blood clots

IBS Symptoms

(Seem to be putting on weight very very easily)

Itch a lot

Wake you in the night a lot

Over active bladder


Loss of sex drive

Stiff a lot, mainly neck shoulders back (lower back worst)

Pins and needles in fingers legs toes

A very strange tingling feeling in my back

Forgetful / concentration is dreadful (a student at uni find this is hard)

Reading but don't take anything in

Ankles ache a lot / feel like lower leg / ankles are swollen


stomach pain

Tail bone pain aching, hurting when sitting, shooting pain when standing

Legs feel like I've run a Marathon

I have had series of tests.. Hip xray, scans, bloods etc, I have an rheumatology app on 27th Dec, I know everyone's symptoms are diff, but does this sound like it could be fibro?

22 Replies

You have got a lot going on! glad you found us. everyone here is supportive & helpful.

It could be fibro but as many conditions have overlapping symptoms only your gp and rheumy can diagnose them. but we can help with any worries, and we also have a lot of humour and virtual fun :D

[ just a curious question - what are you like in hot weather?]

It's only really been the last 9 months I've started to symtoms check. (I have noticed I am hot cold etc, I can't regulate my temperature). I've always been that person sweating without a coat on in winter, or wrapped up in summer, my temperature varies massively and it doesn't feel like weather related.. At first I thought it was all linked to my endo, my dad also has AS ( ankylosing spondylitis ) so I wondered if something along those lines, but inflammation tests are all showing as normal.. Agreed all symtoms could link to something else.. I'm just so tired of feeling like this, what upsets me the most is feeling I cannot complete simple tasks, which leads to being irritable with my friends family and children, I just want to feel well. obv those are all symtoms, some personal, just inc everything I could think of which bothers me.. X

Yay you have joined :-)

Yeah :-) thanks for showing me the site x


Hello charlotte and welcome, the only thing I would like to add is when you see the rhumy , write everything down.Take it with you and give it to is so easy in a stressful situation to forget even the most important things, as I did on my last visit to neurologist. Out of 3 questions I could only rembemer 1..... sue.

Hi charlotte my daughter suffers with fibro she to has all these symptoms and some but she finds it very hard to talk so take mayrose advice write everything down .Its a long road. good luck xx


in reply to bury527

How strange you should write this... this is something I've come across whilst researching.. What made u say that, xx

like you had a lot of symptoms in constant pain thought it was my scoliosis but eventually when i went to see someone at the hospital i was diagnosed with degenerative spine disease and sacroiliitis.You need to be referred to a pain management clinic

in reply to bury527

Thanks, at the moment I literally have no idea why I feel like this, I'm 25 with two children I love and adore but I'm constantly in pain, sleep deprived and irritable, I just want someone to listen and answer why. What will a pain management clinic be able to offer? (That might sound like a silly question because I take it, it explains in the name) but are they after diagnoses? X

in reply to charlotte88

A Pain management clinic will be able to answer all of your questions and listen and prescribe the right medication and course of action for your diagnosis they will monitor you closely and liase with your doctor i felt like you and to be honest i felt no one believed me until i went to see them hope this helps.x

Brill thank you, I have a rheumatology app on 27th dec, should I wait to see what they say? I just can't wait to get some answers, I've noticed AS and Sacroiliitis have some links.. AS is my biggest fear after watching how it's affected my Dad. I have waves of occasional energy where I can get things done, but recently I am physically exhausted, feel so disheartened x

For years went mad with an itchy back, then I had to have an operation for a burst appendix and when I came out they gave me a bottle of liquid wash called "Hibiscub" to was the wound with. One day I decided to shower with it and found the itchiness had gone, now I get it on prescription and rarely itch, even when I do it's only mild. I Don't know if it'll help with you but might be worth a try; apparently it's used by surgeons to wash their hands before they operate, it's also used as a shampoo for horses.


Hello Charlotte,

Welcome to the Fibroaction community :)

As some have said it could be Fibro and seeing the Rhuematologist on the 27th is the first step. Here is some information from our website about how Fibro is diagnosed which may be helpful;

As you can see from the list of conditions, there are others with similiar symptoms the medical profession will exclude before a diagnosis of Fibro is made. Here is another link about symptoms of Fibro;

All these pages are downloadable so you can easily print the information Factsheets for your reference

Reading through your comments I was tested for AS as the initial first possible diagnosis and then this lead to having further testing as they tried to diagnose me. In regards the discussion regarding Pain Clinic here is a post that explains about the services they provide;

I hope this information is helpful. Please take a look at our pinned posts which are on the right hand side of the page as this are usually important and it includes posts about our guidelines, how to use the community etc

Enjoy the community

Emma :)

in reply to Mdaisy

Thank you for ur reply. I will take a thorough look through the info you've given xx


I just noticed that you mention period problems.This is something that I had years ago,luckily my nearest hospital was trialing a new treatment called abolation where the lining of the womb is destroyed. it only took 10 mins under general anethetic and was back at work the next day No more problems. This was 15 years ago and I think it is more widely available now.but you do have to be sure that you do not want more children. May be worth looking into......sue

in reply to Hidden

Thanks for reply, funnily enough I've heard a lot about this recently as it seems to be a treatment for endometriosis.. Which I have, I do have two children already but I am possibly looking at extended my family more in the future, so unfortunately it's not an option for me currently, but defiantly something I would consider later in life x

Hi just red your post i started with my pains and problems when I was twenty one And had my first chid. I to suffer with a great list of ailments like your self ( which I won't bore you with ) one in particular I share is the coccyx pain I suffer from coccydynia, and have been having treatment for it for the last six years through the pain clinic. My experience with them hasn't been good. I've always been made to feel like I'm a nuisance and they don't do certain procedures ( post code lottery ). My gp and counsellor agree that it's time to look for treatment out of county. Soz I'm waffling just wanted to say I hope you get your coccyx sorted before it gets to the point that you can't sit ( without excruciating pain ) at all and I wish you better luck than I had ( I'm to much of a wimp and push over and hate making waves )


Aw no :( sounds like your having a horrible time of it. The pain I get from my coccyx is horrendous, if I've sat for a short while or in a funny way I get shooting sharp and also dull pains, I feel very achy and stiff lower back so it just adds to it, hope you get some answers soon Hun, and people take you seriously and not make you feel unwelcome!! X

Silly question Charlotte, but do you also have cold hands and feet ? or do other peoples hands/feet seem to be warmer than yours ?

All the time!!! There constantly cold, I'm just currently sat hugging a hot water bottle with socks and slippers on! X

Hi Charlotte welcome to our fibro club, look forward to reading your posts....Dee xx

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