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Posted , 9 users are following.

nicola51831
nicola51831

I have a diagnosis of fibromyalgia but I'm 100% certain I have ME has anyone else had this?

0 likes, 16 replies

16 Replies

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  • russ151
    russ151 nicola51831

    Posted

    Hi Nicola I have been told I have both as they can be overlapping conditions but I am sure I just have m e as Its the fatigue that is worst for me I have started going to groups with other people who have these conditions it helps to get a understanding of the condition have you only just been diagnosed?
    • nicola51831
      nicola51831 russ151

      Posted

      With ME yes was diagnosed with fibro in June last year xx
    • russ151
      russ151 nicola51831

      Posted

      Hi Nicola sorry that you have both of these conditions I am unable to work now with the m e for over a year like people have said you have to pace yourself I have found that supplements help me a little definatley get your vitamin b12 levels checked if you haven't already and supplement anything below 500 is low I have recently changed my diet very clean and I have noticed a slight difference anyway hope this helps a little x
  • lau188
    lau188 nicola51831

    Posted

    Hi Nicola, I have ME, I got diagnosed almost a year ago after a bad episode of glandular fever! My ME started out quite mild and I was still able to work, I had been a full time nursery nurse since I was 17 and I am now almost 23! My ME got pregressivly worse and then I had a ruptured ovarian cyst in November which I needed surgery to remove and since then I have been off work sick as the exhaustion is sooo bad, I feel in pain all the time.

    with ME you need to learn to pace yourself as doing too much can lead to a relapse that can take months to get over! There are support groups that you can join/go to so you can talk to people in the same situation, CBT also works well for ME sufferers.

    I hope you are okay smile just remember to take it easy and only do what you feel capable of. Feel free to message me if you want to talk or know more!

    Laura x

    • nicola51831
      nicola51831 lau188

      Posted

      Thanks Laura I already pace myself with having fibro. My head has been really bad for 4 days now none of my pain killers help I keep getting really hot aswell and sweating really badly also when I lay down to rest and close eyes I get a really strange like fuzzy sensation in my chest and head. Do you get this x
    • lau188
      lau188 nicola51831

      Posted

      Awww it's horrible isn't it sad I suffer badly with headaches and a "fuzzy/confused/spaced out" feeling in my head most of the time! I find laying my head on a heat pack or a bean bag that goes in the microwave helps. I get hot sweats during the night to the point my bed is wet from being so hot but during the day I am always freezing cold! I can't seem to regulate my body temp.

      I wouldn't say I get a fuzzy feeling in my chest but I do find it hard to reach the end of my breath and my heart often skips beats which can be quite scary!!

      What do you do as a job? My work are very understanding with my condition and are always trying to help me so that makes things easier x

    • nicola51831
      nicola51831 lau188

      Posted

      I can't work anymore I had to quit in 2013 do to the Fibro xx but I have 5 children which is enough work xx
    • lau188
      lau188 nicola51831

      Posted

      Oh I see, work is a struggle when living with what we have! I can imagine 5 kids keeps you busy 😮 It must be hard when your having a bad day to look after them all! I take my hat off to you.

      I don't know if I'm going to be able to go back to my job with the way things are now, I live with my partner who works full time and we don't have any children yet just a dog lol but I feel bad giving up work and him having to pay for it all as I won't have a income coming in, do you get any help money wise for your fibro? X

    • nicola51831
      nicola51831 lau188

      Posted

      Oh that's a shame hunny sad no not yet I recently applied for pip and they said no but I will have to reapply now with the ME aswell xxx
  • needalittletlc
    needalittletlc nicola51831

    Posted

    Hi Nicola,

    My sister and I both have ME but she has also been diagnosed with fibro. We both saw the same specialist who deals with both that, me and cfs (she's of the school of thought me and cfs are not one and the same). She also saw a rheumatologist who diagnosed her with both.

    The one difference my sister and I have is pain. I have pain in various areas (neck, hips and legs mostly) if I walk or stand too much. She has wide spread pain that seems to come on regardless of what she does, for the most part.

    The frustrating part of all this is that different doctors have different beliefs because there is no conclusive test for either of those. Very frustrating!

    I'm in Canada but I think all government is the same in that they don't want to give up their money so their job is to find any little reason to not give you any. They also assume you are going to give up. Regardless of the diagnosis you end up with, get a lawyer to help you! It's a fight and you need help. I'm not a lawyer smile but I did manage to get government disability after a long and hard 3 year fight, being denied twice before I got a lawyer.

    I really feel for anyone who lives with chronic pain because it just clouds everything you do. I hope you can find relief soon!

    Tracey

  • JulieBadger
    JulieBadger nicola51831

    Posted

    Hi,  I have medically confirmed Fibromyalgia and severe M.E.  I started with Fibro and then at some point I developed M.E.  I am in the UK and was awarded high PIP against both categories due to the affects of both of the conditions.  Unfortunately if I please one of them; ie resting due to the M.E. exhaustion being high, I will then badly be affected with pain the next day because I couldn't move around enough to please the Fibro.  I really cannot please both of the conditions, they are constantly flucuating. 

    ​Therefore I am definitely a case of having having both conditions and I can tell the difference between the two.  Even though they have cross-over symptoms I can often tell which one is causing what.

    ​I would recommend perserving with getting a further diagnosis if you are in the UK.  I get more financial support and my doctor understands what range of medical care I need due to the official medical titles.  It also helps with understanding the severity of certain syptoms; ie my heart rate races at times without even doing exercise, even just while still laying down.  We know it has been highly affected by the M.E. therefore we know there is nothing we can do to reduce it but I mustn't do anything to intentionally raise it like sport because it may increase it too far.  We also know as my internal heat reaction has been affected by the M.E., I chuck out too much heat, suddenly feal too hot and I don't sweat enough, if I get too hot it will then affect my heart rate which will then mean I collapse.  Having the medical titles can then make symtoms more understandable.

    Good luck xx 

  • Deb1982
    Deb1982 nicola51831

    Posted

    Hi Nicola 

    i was diagnosed with fibro in 2010 and then m e in 2013, fibro I I don't is the pain side of things and m e well I'm worn out all the time.

    I did work up to 2012 as a manager in recruitment but the day I left because I had been pushing myself so hard the doc thought I had a nervous breakdown, I was in such a state I could not even rember how to turn on my computer. It was 6 months later I found out I had m e.

    the worse part for me is I have a terrible memory,some time back I parked my car in the town where I live to do some shopping but when I finished I could not remember where I parked my car, I sat on a bench and just cried but a very nice lady sat with me and we went over where i had been and going back helped then I know where I had left the car. Since then I have not drove the car and I can not go out on my own as since the day I now have panic attacks.

    The thing is every one with me has different problems.I would like to say you have not got m e but the two illnesses do seem to go together.

    i also get pip and now have a blue badge so when I go out with my husband I do not have to walk so far as we can park right in the middle of town, also we do not have to pay road tax on the car.

    sorry if I went on a bit.

    debbie

     

    • nicola51831
      nicola51831 Deb1982

      Posted

      Thanks deb that's the worst part for me is my memory I have 5 young children and I really do struggle I'm getting worse by the day my husband had to bath me this morning I hated it I'm 29 and feel 85 it's so hard I cnt drive anymore either xx
    • JulieBadger
      JulieBadger nicola51831

      Posted

      Hi Nicola, I understand about the kids bit.  I have 2 and very much need help from my mother-in-law, hubby and the kids themselves in order for them to have as much out of life as their friends.  I do say my mother-in-law is the third parent, she has them after school, Sundays and days during the hols.  She also cooks tea for us 4 days a week.

      ​I bought a Citreon Grand C4 about a year ago. It is an automatic with automatic brake (all levels are at steering wheel height) and the boot is then big enough to fit my mobility scooter in plus the school bags and other stuff.  It is easy to drive so only when I'm tired I can't drive.  Hubby does all the driving when he's available.

      I also have a Blue Badge which helps with the distances.

      ​Know what u mean re age, I'm 38 now and there are 85 year olds with more energy than me (definately my mother-in-law who is 67).  However, I manage what I can and keep pushing myself to handle even more, (yeah know that I shouldn't but there is loads which still needs to be done).

      ​Don't give up just keep on trying to work out the best way to handle stuff.  xx

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