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Not yet diagnosed but can you have a lapse where it's worse.

Posted , 4 users are following.

SamN22
SamN22

Hi Everyone, 

I am new to this group but joined after my GP referred me to Rheumatology with a suggestion that I may have fibro. This last couple of months have been horrendous with constant pain during the day and through the night. Can it just get worse very quickly and last. I've always had lots of varying symptoms but recently they all seem to have joined up. Can weight also exacerbate the problem? I'm just too exhausted to exercise and I have started to pile weight on as sadly I'm comfort eating. I'm feeling really sad too. My confidence is shot to pieces and when I'm not at work (full time) I avoid going out. Any hints and tips would be greatly appreciated as its affecting me..

1 like, 11 replies

11 Replies

  • deb_43174
    deb_43174 SamN22

    Posted

    I feel the same, I am very active and FM has really affected my life. A lot has come to a halt. 

    I try to accept it and just go with ion days that are worse. Such as changing my schedule I am a bit lucky ...I am not working at this point so have the flexibility to change my schedule or to sit and rest. Although that is very difficult for me. 

    I do not tell friends so that is hard when I make plans and then at the last minute I don't feel like doing anything. I am the type of person that says "suck it up and do it" I then regret it. My husband says he understands but not really sure that he does. On top of the pain I feel alone in this.

     

    • SamN22
      SamN22 deb_43174

      Posted

      Hi Deb, I understand your comments. I commute 80 miles (round trip) to work and have a hectic and relentless job and also try and get on with it as best I can. Lately it's really all getting to me as initially I was harsh on myself and was determined not to give in and was concerned I was becoming a bit if a hypochondriac. It all got too much recently and I ended up at the doctors. I felt a bit of a fraud as my leg wasn't hanging off etc. Im just do fed up of being constantly tired and my get up and go has got up and gone.. Im missing out on my life as I do not have anything left by the end if the week... X
  • deb_43174
    deb_43174 SamN22

    Posted

    I know sometimes I feel a bit like a hypocondrac. The fatigue can be awful ... And being busy can make it worse. Can you find time to take a break where you just lay down or sit quietly? I find that also helps. If I am home I will close a door telling others to leave me alone wink. Or being alon in my car.

    It is a vicious cycle! 

     

  • Xxxxxtttttttttt
    Xxxxxtttttttttt SamN22

    Posted

    hi, yeah the pain can be instant and widespread. I have times when it just stays localised for a while and I will get random attacks all over. Right now its my hips and I cant get comfy in bed. What pain relief have you been prescribed? I totally understand about exercise its something I cant do but when I feel up to it I will walk as much as I can. I have also started "shaking" which is actually very strenuous and something you can do in bed, although it must look very odd! Lol i have put a lot of weight on over the years and I blame pain relief, including steroid injections, as well as anti depressants. The shaking actually feels good and helps release toxins. The comfort eating is the worst thing possible as I really feel sugar plays a massive part in our pain. I cant help myself either though and have to have real self discipline not to reach for a bar of chocolate or huge slice of battenburg to cheer me up! I have been the same about going out so I deliberately planned some walks on our Meet up group so that I had to go, I knew if I had arranged them I would force myself to go and it does help. Random but my thumb is giving me hell at the mo! I wonder whether anyone else finds that!? Hope you get some relief soon, oh and I am trying caprylic acud and hemp oil too x
    • deb_43174
      deb_43174 Xxxxxtttttttttt

      Posted

      Right now it is in my hips legs and knee. Pain worse at night.and a I know it is the weather, exhaustion and stress, meaning over exherstion, lots of running around and very little support wink
    • Xxxxxtttttttttt
      Xxxxxtttttttttt deb_43174

      Posted

      i don't know how other people feel but it seems every 5th person I talk to has fibro! I have always felt my diagnosis was a cop out cos the just don' know what it is! They seem to jst diagnose fibro when they can't figure it out, or just don't want to pay for expensive  scans etc. I have been told I have an auto immune disease but the rheumatologist said fibro isn't an auto immune disease! I started with pain after an injury when I fell down a hole, landing on the corner of a grid damaging my coccyx, pelvis and spine 22 years ago. The first 4 years or so was back pain and sciatica. Then my hands swelled up to double the size and were painful, then gradually my feet became very painful, toes felt like they were broken, neck started to suffer then eventually aches and pains all over. Sometimes I can be just sitting watching tv and I get random, excruciating pain in one of my legs which will just flare up, die down and flare up again for hours, then go and reappear somewhere else. Whats tht about!
    • SamN22
      SamN22 Xxxxxtttttttttt

      Posted

      I was diagnosed with Reynauds when I was 5 years old (34 years ago lol) and I've always had some ailments which ongoing GPS at the time put down to the fact that I was so premature. Three years ago my asthma put me in hospital and I was given huge doses of antibiotics, steroids etc intraveanously... Sadly a month after this I developed Deranged Liver, hepatitis and Jaundice and was rushed blue lights back into hospital. The amount of meds I had been given during asthma admittance had actually poisoned me and my liver was critical... Awful for a person who doesn't drink at all.. It is since then that I have not been right... But you just keep going and I saw each symptom in isolation... Another nuisance to pester me so to speak. It was only after I sat and moaned one day about my body dropping to bits that another fibro sufferer told me it was all the symptoms she had and to get to doctors... I've had blood tests and they are all ok although three years on my liver is still a tiny bit high and I'm severely vit d deficient. I now wonder whether when I was poisoned by the hospital (not their fault they couldn't have known I would react) that it was the trigger for all this... Xxx
    • Xxxxxtttttttttt
      Xxxxxtttttttttt SamN22

      Posted

      yeah you have been through a bad time! It seems that it is usually some kin of trauma that kicks this thing off. I take vit D too, discovered low when my mouth was full of ulcers. My doc thought I was a heavy drinker as my triglycerides were xtremely high-should be about 1.5 to 2.0. Mine were 28.3 and I very very rarely drink! A shandy once in a blue moon, a rum and coke once in several blue moons, got it down with the help of pills, although still more than double what it dhould be
    • Xxxxxtttttttttt
      Xxxxxtttttttttt SamN22

      Posted

      sorry tried to go ack to amend should and couldnt get back in box, i hate this ipad at times! Lol so what pain relief have you been given? Xx
  • IRISH_SUFFERER
    IRISH_SUFFERER SamN22

    Posted

    Hi Sam,sorry to hear fibro has been suggested but as you said suggested the sad reality medicine falls way short in something's.

    Unfortunately lots of people are left hanging on a wing  and a prayer,nothing in or out.

    It's hateful been in pain 24/7 but if I can suggest something about your health and if you can cut the cloth to suit,ease up in work and do some gentle exercise.Its very important to listen to your body mind/head as if it is fibro it can mess with both.

    I am suffering I wide range of ailments over a period of about 15 years and unfortunately had to give up work. I think my problems started when I broke my neck and was involved in a couple of R.T.A,s.This can happen in some people with fibro but some it  just arrives .

    Please watch what medication they put you on and do your on research but I have found if I can stick it,to do with out but that's me caution.

    As weight can exacerbate any health probems well it goes without saying so hopefully  this helps a little and try to adjust if you can its important as it's your health and money can't buy that for sure.

    • SamN22
      SamN22 IRISH_SUFFERER

      Posted

      I think it's sad that nearly every person who has fibro diagnosis also makes the comment that they feel a fraud or people don't understand as its not a specific illness that people can see... My colleague who has it was embarrassed when she told me she had been diagnosed with it and for an educated woman said that she refused to be diagnosed with one of those made up illnesses. She meant its new and not a traditional diagnosis that people can relate too. I must admit the pain etc is very real at the moment and I can only presume I am having a flare but I look well and it is embarrassing... From today I'm cutting out all chocolate, crisps and the like to get my weight down to see if my energy improves as I have none at the minute. I'm ashamed to say that the smallest routine chores feel like individual mountains to climb which fill me with horror. I've got to try and do something... Hugs xxxx
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