1. Community
  2. Bones, joints and muscles
  3. Fibromyalgia Syndrome

Could it be Fibromyalgia???

Posted , 9 users are following.

famrosa
famrosa

Hi all,

I’ve come to this forum because I am really struggling with what is happening to me. I  would like to share my experience and possibly get some advice. I haven’t had a diagnosis but I suspect I may have fibromyalgia and/or some form of R.A.

 

For the past three years, I have been experiencing, unexplained muscle aches, joint pain, pelvic spasms, lower back pain, pain in neck, and shoulders.  I originally put most of these symptoms down to the woman change but that has now been ruled out due to a full hysterectomy.

My thyroid function was just below normal, and after taking medication for this it is now normal. I was vitamin D deficient, but I am now taking Vitamin D supplements and the level is higher now.

 

Recently I have been experiencing difficulty carrying out simple tasks, such as cooking, washing my hair folding laundry and extreme fatigue after any physical activity.  Walking to my local bus stop is painful and I end up walking like a drunk robot. I lose my balance a lot, my concentration/memory is bad and my ability to ‘find the right words’ in conversation is a problem. Terrible headaches, painful feet if I walk for any length of time.  I wake up feeling as if I haven’t slept, my entire body is really stiff and in pain, my hands feel swollen and I can’t grip things properly.  This usually eases off after an hour or so.

 

I’ve seen a Neurologist – who has ruled out a neurological reason, but  he did note that I was ‘unsteady’ on the Romberg test, and he mentioned that I found tandem walking difficult and I have a waddling gait. (drunk robot)………..  I had an MRI scan for my neck and upper spine – (results to come), and I am waiting for an appointment to have an EMG  for muscle testing.

 

I have been seeing an Endocrinologist and had loads of scans/blood tests, most have come back normal -  my ESR -27 and CRP- 3.8 then 2.7.   She wrote to my GP and asked her to refer me to a Rheumatologist. My GP called me in and said she didn’t want to refer me to a Rheumatologist until I have more blood tests.   So she ordered yet another set of blood tests  which will probably come back ‘normal’.

 

I have just spent the past 3 days in bed because, I had two appointments last Thursday and Friday – both long bus trips and long waiting times. On Saturday I felt like I had the flu and couldn’t do a thing for two day 2 days.

 

After a lot of researching and ruling out other similar conditions, I came across Fibromyalgia, and suspect FMA and/or possible R.A  is what may be going on with me.  After coming across this forum and reading posts from members with similar symptoms, and experiences I really hope  someone can shed some light on all of this.

 

REALLY SORRY FOR SUCH A LONG WINDED RANT, but I’ve had a crappy couple of days.

 

Thanks Ela808

3 likes, 54 replies

54 Replies

Prev Next
  • jemini
    jemini famrosa

    Posted

    Hi Ela,

    all this sounds so familiar. I'm so glad we have this site for help and support. Best of luck, Jem xx

     

    • famrosa
      famrosa jemini

      Posted

      Hi Jemini,

      Thank you so much for your good wishes - I really appreciate everyone taking time to  give support and advice.  Will let you know how things go.

      xx

  • Meg53
    Meg53 famrosa

    Posted

    Hi Ela, I have just recently joined this site and I feel less lonely, being trapped in this horrible condition. Everyone is so supportive and perversely it helps to know there are people out there experiencing similar symptoms to you.

     I have over the last year gone through all you are going through right now. I had so many tests with so many doctors, the only thing wrong they could find was B 12 deficiency and a positive ANA but but not the markers for lupus or any rheumatic condition.

    It was only when I went to a pain clinic that I received the whole coordinated treatment that I needed. 

    I do wish you luck and hope that you will get a proper diagnosis and the help you clearly need.

    Meg

      🌺

    • famrosa
      famrosa Meg53

      Posted

      Hi Meg53,

      It's was so nice waking up to the suppotive messages from lovely people on this Forum.  I am waiting for blood test results for Rheumatic makers and ANA etc.  I was just wondering, if they ocme back negative, what my next step should be.  I KNOW something isn't Are you in the UK? Do you need a GP referral for the pain clinic?

      Thanks again for your kind words of support and encouragement.

      Ela xx

    • jeanne81532
      jeanne81532 famrosa

      Posted

      Hi again Ela. Just seen another post and your query about pain clinic referral. Yes you need GP referral. I was actually diagnosed at the pain clinic. The Consultant did the trigger points test, and they were all positive. It was the first time anyone had done it even when I was querying  fibro myself. The rheumatologist I saw wasn't interested in anything but epidural injections for back pain, but I think I'm the exception to the rule on here! Jeanne xx
    • Meg53
      Meg53 famrosa

      Posted

      Hi Ela, sorry for the delay in replying, no I am not in the UK however after reading subsequent posts it seems as though the same system of referrals occures in the UK. If you current GP won't cooperate after you present you case, then it may be time to go through the stressful time of finding a new one, if possible. Best of luck and take it easy, there is help out there it just may take to get there. 

      Meg

        🌺

  • kaz_40
    kaz_40 famrosa

    Posted

    I feel less lonely since joining this site last sunday at least we can all help and surport each other. we all know what each other is going through and how it makes us feel gentle hugs and take care 
  • kaz_40
    kaz_40 famrosa

    Posted

    Hi hun your gp needs to refer you to the pain clinic get as much advice help surport from your gp as you, if their no good change to a different gp Thank goodness I have a great gp so surportive and gets you the help you need. do some research on fibro thats what I did.I went to able world to buy some different aids to help also when I was bed ridden for 6 months i 2013 and again in 2014 unable to walk and very ill. my gp got me carers in and also equiptment to help me like commodes a bath board to sit on she got a physio to come out who provided me with a walking frame walking stick perching stool for the kitchen to sit on. I live in shropshire in the uk. my gp has been great all through visiting me at home to check up on me when I was laid up in bed for over 6 months at a time. back in2013 and 2014. get as much help surport as you can and buy aids to help you anything to make your life easier you have us ladies for surpor also. take care hun we are all in it togeather gentle hugs
  • lisa52101
    lisa52101 famrosa

    Posted

    I too had many of the symptoms you describe complicated by also having osteoarthritis in my spine mad both hips. I think I passed through every hospital dept there is and I really thought I was beginning  to lose my mind.

    eventually I begged my gap to refer me back to see a rheumatologist as my hands and feet were swelling up terribly. RA was the last thing I wanted but I knew something wasn't right. Like you simple exertion was crippling and I could stay in bed for days, which then had an impact on my back and hip pain. I was on a crazy amount of pain medication including anti inflammatorys, fentanyl and morphine, all of which have side effects.

    Well, after all my tests were normal, I do indeed have fibromyalgia, but it has taken 3 1/2yrs in total because it is a condition confirmed by the exclusion of all others. The bad news is that there is no cure however there are medications that can help. I found just having a name for what I was experiencing helped. To know that I wasn't losing my mind or being soft or worse making it up from my imagination.

    There could still be another reason for your symptoms, just know your not going mad. You have to pace what you can do as pushing yourself, just to prove you can, will only make it more difficult for you to function. My physio told me "when you think you have one more thing in you, stop!"

    good of luck and I hope you get a diagnosis soon xx

    • famrosa
      famrosa lisa52101

      Posted

      Hi Lisa52101,

      Sorry hun i'm quite new to how forums work. I haven;t been on for a day or so because I've had a couple of early morning appointments.  Lots of travelling by public transport and as you are very well aware, youjust get totally wiped out, slept in the afternoon and was useless by evening.

      Thank you for your kind supportive words, and sharing your experience with your fibro diagnosis.  

      I too think there is another reason for my symptoms, understand that it will take time to get a proper diagnosis.

      I got my blood test results from my GP

      Anti Nuclear Antibody

      B12

      Anti-CCP (Anti-MCV)

      Coeliac Screen

      CRP

      ESR

      FBC

      Serum Folate

      Rheumatiod Factor

      TSH (TFT)

      Renal Profile (U&E)

      Vitamin D

      ALL came back normal, so I am at a loss.  My GP is now on holiday and I'm worried that because of my results, she will not want to refer me.

      I noticed something about my symptoms yesterday - that I would like some feedback on.  Not sure how this forum works, I should prob start a new discussion.

      Again, thanks for the reply, I will keep you posted.

      Ela

    • kaz_40
      kaz_40 lisa52101

      Posted

      Hi lisa I started being ill in2004 it took till 2014 to get a diagnoses from a rheumotologists. I saw no end of specialists and lost count of the tests I had as for blood tests I had that many I felt like a pin cushion. I felt like I was going mad with it all. I did start to think it was all in my head as all tests came back normal except 1 which showed low vitamin d. anything you need to know about fibro and symptoms just ask her girls. fibro is different with all of us some have it really bad others may not it varies from person to person my advice is research fibro find out as much as you can about it. getall the help support you advice that you can especially from your gp and rheumotologist and see if theirs a fibro support group near you gentle hugs take care.

       

  • lisa52101
    lisa52101 famrosa

    Posted

    Hi Ela,

    i too am new to this sight, well to forums in general. I'm sorry to hear you've had a rough couple of days but I understand what you mean re the tiredness etc from travelling to and from appointments. I find more than two a week is tough and I have a car, with someone to drive me when I can't manage it myself.

    i was in hospital about a month back for something completely different and I haven't really been well since. This week has been particularly bad as my feet have been incredibly painful, something which I've never experienced before. I think what I'm trying to say is don't apologise for the 'rant'. We all have hard times and finally I feel that I can say how I'm feeling on here without feeling like I'm complaining to much and hopefully you will be able to feel the same too. 

    It's so difficulty hen you feel like your climbing a mountain without the support needed to get you to the summit, or even the knowledge to know how much further you have to climb. If there is talk of the rheumatologist referral then your well on your way to finally getting answers. It seems like this is how almost everyone on here got their diagnosis. It was for me although the pain clinic I had been attending two years previous wrote in my notes that this was the most likely cause of my symptoms,although nothing was said to me. I was so angry when I heard that but at the same time I cried with relief that finally I could say what was wrong with me.

    Just as a side comment I have also noticed how many of us have been found to be vitamin D deficient, something I was really surprised at when my bloods showed this. I have always been really careful to have a balanced diet as a chef in a former life, and also there is a genetic condition in my family that affects our joints and connective tissue. I don't know if this could be a causal effect to developing FM or because we have it we somehow lose our ability to store/use it effectively.

    Anyway I really hope you start to feel better in yourself and rant away

    take care and sending careful hugs your way.

    • famrosa
      famrosa lisa52101

      Posted

      Morning lisa52101,

      I totally understand about the feet thing, I was seeing a podiatrist to help with my painful feet.  I got special insoles for my shoes, and have to wear weird trainers/walking shoes.  I have realised that all the separate ailments I have endured over the past few years, have been related to muscle/joint/connective tissue problems.  

      The GP I am seeing now has already said she doesn't think a rheumatologist will find anything wrong with me. So I may have a bit of a battle ahead, to try and get referred.  Especially now my blood tests have come back normal.

      When I started getting backache a couple of years back, I was told I have lumbago,and prescrbed co-codomol/30 with paracetamol.  My pain was masked for a while but i was worried about becoming addicted to the co-codomol, as I couldn't manage without them. I have since cut down to co-codomol/15. I take 1 of these with normal paracetamol about 3 times a day.  Last week because I had the two appointments, I decided to take two co-codomol. One dose when I woke up and another 4 hours later.  This was a real eye opener for me.  The general all over pain subsided and I wasn't as miserable (despite not getting a seat on the underground and having to stand for 20 minutes). I was able to walk a little faster. However, when I got home the fatigue  hit me like id feel flattened by a steamroller.  I felt awful and within a couple of hours of being home I had to sleep.

      I realised how much pain tolerate on the lower dose and the pain killers just mask what's going on in my body, and no matter what dose I take, the fatigue is always there.

       

      I am going to start keeping a symptom and activity diary so that my GP can get a fuller picture of what I go through on a daily basis.  She seems to think I am making a fuss about things, but I know something isn't right despite what the blood tests say.

      Im going to try my hardest to rest this weekend, I have a EMG (muscle test) next week.

      Have a good weekend, love and blessing.

      Ela x

       

    • jeanne81532
      jeanne81532 famrosa

      Posted

      Hi Ela, I was so angry when I read that your GP says the rheumatologist probably won't find anything wrong. Does she know anything about fibromyalgia? Grrrrr! Best of luck, sounds like you are going to need it. Jeanne xx
    • famrosa
      famrosa jeanne81532

      Posted

      Thanks Jeanne81532,

      I am slightly wary of mentioning the F word to her, as  i find it hard to communicate with her. BUT I will have to if I want answers, it's time to let her know I mean business.

      I'll let you know. xx

    • jeanne81532
      jeanne81532 famrosa

      Posted

      Yes please do let us know. You need to remind yourself 'I am strong, I am invincible, I am woman! And I need to stand up to my GP.' We fibro-ites have to take ownership of our condition. Hugs. Jeanne xx
Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.