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Is this going to get worse??

Posted , 6 users are following.

kate288a
kate288a

Hi everyone

Im fairly new to my diagnosis of fm, in my case it is secondary to 2 autoimmune disorders. I feel shattered all the time and sometimes I can't lift my head off the pillow for days. Im 33 and had a disc removed when I was 27 and so have struggled with chronic pain for years anyway. Im on immunosuppressive medication and also medication to tKe the edge off the pain plus I can take tramadol or dihydracodeine. All of my joints and muscles hurt everyday but I am still more mobile than most on here, it seems. What id like to grasp, is how can I expect this to progress as I get older, in others experiences? It is possible I will remain as mobile as I am currently or is it more likely to get more and more difficult? I only use a walking aid when my lower back goes but it does effect my neck and shoulders to the point where I cant turn my head properly or lift my arms, but this isnt every day or even every week. I am still clearly less able than 'non sufferers' but I would just like some idea of what I can expect for my future? Any advice or to learn of others experiences-although I appreciate everyone is different- would be really appreciated. Im feel like im gradually going downhill and its effecting my career and life overall. I know im not dying but I dont feel like im living much fibrat the moment either.

0 likes, 18 replies

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  • doris7
    doris7 kate288a

    Posted

    Hi,

    I was diagnosed with fm when I was 30, but I have been ill probably all my life. I also have 2 other autoimmune conditions (hypothyroidism and PCO, which are manageable and not very harmful). I can say I got a bit worse over the years.

    I've had low pain threshold and hypersensitivity all my life but now I'm clearly more often in severe pain and have some mobility issues, though I don't use walking aids as my doctor told it would damage my spine.

    I haven't found any information on how bad it can actually get, however, most doctors say our physical status doesn't change. 

    I'm not extremely optimistic about the future, I'm worried about not being able to work or to fend for myself, but I do everything I can to postpone that moment. And the hope is that if I've managed to survive 34 years in a relatively good state, I may be able to plod on for another 30 smile

    • kate288a
      kate288a doris7

      Posted

      Hi Doris

      Thank you so much for getting back to me. It sounds like we're both worried about similar things, namely our futures. I too have always been a bit more sickly than most but just always put it down to bad luck. It's true what you say though, I've struggled through this long so who's to say we can't do another 34!

  • terig
    terig kate288a

    Posted

    oh kate...i feel you pain....i am going to be 59 in august and i have had fibro and sarcardosis for 20 years...i know its hard..of late i have had foot drop and drag and fasciculations and believed i had MS but all the test came back ok...so i guess its just the fibro.....trust me there will be good days and bad days...and yes you are not dying....that is important to remember as  the last 3 years i was convinced i also had  ALS....had all the tests and NO ALS....i wasted even my good days panicking....soooooo please don't do as i did...take hold of the good days enjoy and rest rest rest when your body tells you to. i am already feeling better getting out in the fresh air now that this 'dam' winter is over....where do you live?

    i live in Toronto Canada, i used to winter in West palm beach florida, but could not make it down this year from all the aches and pains.....please enjoy your summer, use hot water bottles and freeze packs for your aches and pains it really helps...good luck to you.

    • kate288a
      kate288a terig

      Posted

      Hi terig

      Thank you for your kind words. I live in South of England, so not too hopeful about a great summer but our winter has been much milder than yours I bet. I expect.my toes would drop off if i had to live in such a cold place. I have some family in Toronto. What an amazing place and super hot summers if I remember rightly ( I visited when I was 17 for 6 weeks). There isn't much to miss where I live but I feel for you being in such a wonderful place and not being able to fully enjoy it.

      I will try and remember your words when I'm having 'good day' whatever that is smile

    • terig
      terig kate288a

      Posted

      hi again kate....where in England exactly do you live..i love England...everything about it...all i read is British history! I read the novel by "London" i think by author McCullogh, i am not sure...anyway i read it before we took a trip to London, in 2006. i would love to go back and spend a couple of days in the Portrait Museum! my favoite contemporary aurthor is 'Penny Vincenzi"....her Angel series if a favorite of all time and i give the trilogy to several friends for gifts! 
  • Xxxxxtttttttttt
    Xxxxxtttttttttt kate288a

    Posted

    hi Kate I have to admit that my pain has been much worse in the last two years and is constant in my hips. No matter what I do this has never gone away. It is either just bearable or dreadful, but the other pains in my hands, neck, shoulders, back and feet are intermittent so that is something. Although I have some days where I feel desperate, there are others when I feel quite positive and I do believe that a positive outlook is part of the solution. I am 46 and have suffered since the age of 24 following an injury to my spine and pelvis. I would agree with terig that you must enjoy your ood days. The more you have of them, the more likely you are to have more of them. Don't lose hope when it gets bad, as I have done. This last year I have been iff work 7 months, last year it was 3 so I worry that that will get worse, but I am still looking for another job to go alongside my part time job as I want to push myself. I find if I make plans I am more likely to get on wih things. When I don't I mostly just stay in bed playing chess on my ipad! But then I feel I have wasted a day and shoud have attempted at least a short walk. Finances are not good after all the time off sick and I have just defaulted on my mortgage for the first time in my life, whih inevitably adds to the stress, which in turn adds to the pain, so it is important to remain stress free. I also strongly believe that if I lose some weight that will help me, so I am aiming for 2 stone in total. I also do tarot and angel therapy, which helps me relax and focus. I still think about going off to lve on the canal and dream about a stress free pain  free future and thi is important 
  • Xxxxxtttttttttt
    Xxxxxtttttttttt kate288a

    Posted

    continued.......(blinkin ipad!) ........ for the healing process. I am taking caprylic acid pills now too as my colleague was told by her osteopath that yeast overgrowth can be one of the causes. I only started a week ago and I do believe I feel somewhat better. I deinitely have a bit more energy as apart from today, I have not felt the need or a nap in the afternoon. I have a slight hest infection right now, so I have put the tiredness down to that.  I too use a walking aid when I need to. Isn't it strange the way people treat you differently when you have a stick! I go to my local Aldi most days as I cant carry much, but the staff have never noticed me till I was in there 3 days in a row with my stick. Then one said "you here again?". I told her I have come almost very day since it opened! Lol

    i know what you mean about not feeling as though you are living much. I have not been to any social events for a long time and keep vowing to at least o to a pub quiz

  • Xxxxxtttttttttt
    Xxxxxtttttttttt kate288a

    Posted

    Sorry about the spelling mistakes, its my ipad, not me! Lol

     

    • kate288a
      kate288a Xxxxxtttttttttt

      Posted

      Hi shazzy

      Don't worry about the spellings! We have bigger things to worry about smile

      It sounds like everyone finds their own way of coping with things...even when they get worse. I suppose I'm still fairly new to all of this and am trying to get my head around it all before I can start figuring out what makes me feel a little better. I've noticed my job has a particularly bad effect on my stress levels and I seem to be going around in circles with it..feel better, go to work, get stressed, pain gets worse and tiredness unbearable, go sick again. It's awful. I've struggled so far to get to level I am at in my job but I think I need to find something that has less stress related to it.

      I suppose I need to start a diary or something and note what make me feel worse and what doesn't make me feel so bad. I also need to lose weight but have out most of my weight on due to different tablets I have been on for the last few years...anti depressants, amitriptyline for nerve pain and plus the tiredness makes you think you're always hungry. I'm lucky to still be a size 16!!

      Having to default on any payments is always a worry, especially when you can't physically change anything about your situation.

      I have a mortgage too and highly suspect I will be in a similar situation in the foreseeable as I have just been signed off for 2 weeks after I have a week self certified. I'm struggling with work and home life especially after just being involved in a minor car accident. All the hassle of having to deal with insurances and buying another car etc. My job is really stressful but I am sure they won't let me reduce my hours as it's a full time role. Everything is just very 'what if' at the moment. I just want to be better equipped to cope so am getting some counselling next week.

      Kate

    • Xxxxxtttttttttt
      Xxxxxtttttttttt kate288a

      Posted

      Good luck with the councelling I hope it works, mine wasn't any good, but I put that down to the guy who I had, it was phone councelling too as I couldn't get out at the time. I went back to work part time two weeks ago and I am struggling so just hoping for a lottery win! Lol I do feel like I am living on borrowed time as far as working is concerned so I am looking for something to do from home. I am a psychic tarot reader so I can do that on the phone and also dog holidays, so when I am in a better frame of mind I will do that. Stress at work is so bad for this illness and financial stress too so hopefully we can all find a good balance to ease the stress. People are treating me different in work too, one or two in particular getting digs in about being off so long. They really have no idea how bad this illness gets. I was lying in bed calling out to my kids to bring me a drink when I couldnt get out of bed, crawling to the loo, which is luckily right by my bedroom, unable to wash, dress etc. you wouldnt wish it on anyone but I really think they just don't want to know and would prefer to think I was putting it all on!  

      I have decided that whatever it costs I will have a holiday soon so that will be nice to focus on! We all need to dream! Lol

      take care x

    • terig
      terig Xxxxxtttttttttt

      Posted

      hi shazzy..saw my neruologist today he put me on Lyrica, i have refused gabapentin and amytripelene before, i have heard bad things about lyrica so i am a little nervous....and wouldn't you no it i for got to ask about a support group..so i just emailed him. hope you feel better and get to have that holiday...we cancelled out trip to florida this winter i was so bad...it really sucks!
    • terig
      terig kate288a

      Posted

      kate..i am budding in...i am 16 plus , probably a 18...and my dr. just put me on Lyrica...i am in a panic i  know how you feel, one day i just don't care and the next i panic...will i reach 200 pounds! i already bounce around 175, never never never in my life have i been like this.....!

      nice to share with you.

    • Xxxxxtttttttttt
      Xxxxxtttttttttt terig

      Posted

      oh dear I am sorry you have cancelled your holiday!  I was on lycria, its still on my repeat but I never order it. I didn't like it and I can't remember why! I think it made me feel sick and very tired -pregablin?  I had gabapentin years ago and put a lot of weight on and it didn't help so stopped that. And I was on amytriptalene many years ago too, got up to 4 times the original nightly dose but that stopped working too.   I Live in England too
    • Xxxxxtttttttttt
      Xxxxxtttttttttt terig

      Posted

      sorry my ipad again! Anyway yeah I live near Chester. I don't know whether I will get a holiday for a while but desperately need some sun and relaxation so here's hopin! Hopefully you will get a holiday soon x
    • Xxxxxtttttttttt
      Xxxxxtttttttttt kate288a

      Posted

      i am in  a 16 now too and I just don't feel right. I was always skitted at at school for being too skinny so my body is just not coping well with all of this excess weight. Its a vicious circle though isn't it?! You take the meds to help with the pain etc, put weight in with the meds and feel worse with the extra weiht! X
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