Diagnosed with Fibromyalgia but think it could be CFS

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Hi everyone, i was diagnosed with fibromyalgia in december of last year after months of feeling awful but im still not satisfied, from what ive seen on here the pain with fibro is constant and all over the body, whereas my fatigue is much worse than the pain i am in. My symptoms are:

Really tired all of the time, can sleep for over 12 hours at night and have four hour naps in the day which interferes with my general activities. (Worse after physical exersion)

Headaches nearly every day

sore throat or feeling of "lump in throat" and swollen glands in my neck

Muscle aches and pains

Muscle twitching and jolting, particularly legs

Particularly painful neck muscles and base of head

acne that I never had before

Severe Health anxiety

clicky joints

Hair loss

High ESR in blood tests

Does anyone relate to me or think that I have been misdiagnosed as the fatigue is a lot worse than the pain for me?

Thanks

Holly

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11 Replies

  • Posted

    All the symptoms you mention are part of ME/CFS. But, I don't know. Maybe they're part of fibro, too? I think fibro is partly diagnosed by pressing on several specific "trigger" point on the body, which result in pain. Also, a person can have both ME/CFS and fibro. I don't know what ESR stands for. Also, fatigue is common in both conditions.
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    • Posted

      Thanks for your reply, and yes my rheumatologist did the pressure point test and even though it was sore because of my muscles it wasn't excruciating or anything and ESR shows if you have inflammation in your body. I do because my ESR was high but the docs aren't worried!
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  • Posted

    hi hollymay. yes, whilst the symptoms you describe fit the ME/CFS picture, they are however, usually more numerous. obviously u have the fibro sensitive points. many of the ME/CFS symptoms overlap with FM. approxmayely 50 % of ME/CFS sufferers also have FM. i think the ESR would be raised with either of these conditions. a CRP (C-reactive Protein) test measures the level of inflammation in ur blood stream and gives a clearer picture of how inflamed ur muscles etc might be. hollymay, it might be a good idea to have your thyroid tested i.e. T3, T4 & TSH as hair loss can be one of the key signs of hypothyroid as well as b12 deficiency - all have auto-immune connections. differential diagnosis, through the process of elimination is important where ME/CFS is suspected as often once the diagnosis is made medics tend to think the ME/CFS is the cause of everything. consequently, important stuff like b12 deficiency & thyroid anomolies go undetected.
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    • Posted

      Thanks for your reply, I have had my thyroid tested and that was all fine, they found I was low in vitamin d so I am on supplements for that.
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  • Posted

    Hi holly I don't think that I've been proper diagnosis I've been ill for 25yre but have good times when I can do all the normal things that I used to do but where my problem is is at the back of my head it does effect my balance get very shaky feel as if there is something stuck at the back of my head and the signals r not getting through had this some jan and can't get any help with it any one else got similar problems x
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  • Posted

    I think most people would expect you to say that pain is worse than fatigue, maybe your Dr didn't get that you feel it's the other way round.

    even if you do have CFS how does that help. There is no magical cure for the condition, and in my experience little help, so it becomes a nice to know and you can start pacing to help the condition

    best of luck 

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  • Posted

    Hello Holly, 

    I have been officially diagnosed with both Fibromyalgia and severe CFS.  Although in my experience I can tell the differences between the two conditions due to their symtoms, I would also say that their symptoms over cross too. 

    One of the clear indicators of Fibro is the pressure points.  When my pressure points are pressed they really do HURT!  Not just an ouch but a really "stop that or I'm going to hit you over the head with my handbag" level and it will continue hurting in the spot afterwards for a few more minutes.

    My personal CFS / ME is really draining my energy, my co-ordination, my multi-tasking, my heat tolerance and now my heart rate. 

    I am in constant pain now, it used to be I would be in pain everyday at some point of the day but now it has increased.  I would proberly say it is the Fibro that is enhancing the pain and my stiffness. 

    Both attack the memory especially of names but I think it is the CFS which is taking it to the level I can't remember actions that I've done only minutes before also simple spellings.

    From your list of symptoms I would more hedge towards ME/CFS not Fibro.  My exhausion comes from my ME/CFS and I have post exhausion problems majorly.  Against your list I have them all but not the hair loss or the high ESR results.

    It might be that you have them both but at this stage your CFS symptoms are more noticeable?  The advantage of getting a definate diagnosis would encourage the specialists and your doctor to perscribe relivant medicines and coping techniques.  It really helped me emotionally settle when I got the full diagnosis.  It didn't make it go away but I felt abit more calmer when I could research the conditions I understand what was creating my symptoms.

    Good Luck xx

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  • Posted

    Hi Holly;  I too have Fibro, and yes, as you say, there are sooo many other symptoms that can make us ask questions.  From my experience, the Pain is not always ALL over the body at the one time....it goes from place to place...sometimes I feel Soreness in both hips, then it may go to arms,  then it can be in my Shoulderblades...at present it is in my Jaw joints/facial muscles/neck muscles..and believe me, this can be the worst, as we use ALL of these muscles/joints ALL day, and so by afternoon, it really hurts to talk/eat...  the tiredness has always been a big issue for me too, especially is I decide to go somewhere one day, and then I pay for it the following 3 -4 days.  I have to Actually plan my week, and appointments with doctors/physios..even to the day that I need to go to chemist to get scripts filled....I can't expect to do one thing one day, and expect to do the others the next day...eg, went to Rhuemy on Friday, and still havn't got the bloods done/scripts filled yet (today is Tuesday)...too tired/sore....have physio tomorrow, and am needing to rest, and then will need to rest Thursday, for TMJ Specialist on Friday...I think if when you say the pain is the worst, along with the tiredness, then you prob do have Fibro...it just takes us MANY years to accept it....another lady who helps us on this site, has given me good advice, and also suggest that we look into our Thyroid uptake of T4, as this could help us with our Tiredness...the only pain relief that works for me is Amitriptiline (Endep), as it helps with the Burning pain that comes with the excessive heat that we get exposed to here in Australia...that is why, at first, drs here thought I had MS, as it too is exacerbated by heat...even a Hot bath can do it for me....does this help you at all?    Bron
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    • Posted

      Hi Bron, thanks for your reply. It is helpful and this condition can be so confusing as the symptoms are so vast and ever changing ! I am on amitriptaline too as it helps me feel more refreshed when I wake up and eases the pain x
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    • Posted

      That's good; all that I can add, is to Hang in there, and listen to all the advice that you are given....the thing I find the most helpful is the Physio....find yourself a good one, and keep those muscles as loose as possible, and then the headaches, soreness arn't soooo bad.  I also have found that some valium for neck muscles, at night, can help when they are too stiff.  xx
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  • Posted

    Hi Holly,

    I agree with others, symptoms are quite classic of cfs/me.

    Generally cfs is classified as the weakness/fatigue element and the pain is the fibromyalgia side. Frequently both diagnosedvseparatly.

    That said there is alot more to it than pain and fatigue .

    I am like you, the fatigue being worse than the pain. My mobility is effected and can fluctuate hour to hour/day to night or days. Pacing helps but doesn't stop it. Very frustrating and changed life massively.

    Always get symptoms checked though, don't allow dr's to presume its cfs/me all the time.

    xx

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