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anyone else in same boat as me?? pain spreading rapidly?

Posted , 12 users are following.

melissa30395
melissa30395

Has anyone elses found that their pain has moved into different areas within a year as mine seems to be spreading around my body like wildfiresad((?????It s like its getting worse everyday too scared what tommorrow will bring when i wake up!sad

2 likes, 37 replies

37 Replies

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  • jane218p
    jane218p melissa30395

    Posted

    Hi Melissa yes unfortunately I to am the same, no 2 days are the really, I find some of my tablets help sometimes but they never take the pain away completely! Baths can help a little to sometimes. I am only now just realising how any of us suffer with this awful burden! It's not something that gets much attention in the media etc and I think it should! More people should be made aware of fm!

    Hope you all have a lovely weekend

    Thoughts n hugs

    Jane

    • deb97936
      deb97936 jane218p

      Posted

      I am also of the same mind...'Why is there not more awareness or knowledge put out there'...  Unless it's a condition that to many folk can immitate to easily ????   Hence the relunctance for doctors sometimes to diagnose, till at least there is some form or type of secure and sound testing method??   Doing those excellent head scans on folk is one thing but the cost is HUGE!!  and no government Health Board can have a budget that big..  hmmm  However I do think 'a lot more can be said, and put forward in support of those sufferers'...   Good statement Jane to melissa..  bless ya both
    • jane218p
      jane218p deb97936

      Posted

      Hi deb, I never even have it a thought that people would imitate/fake a condition like this but your right I think, there are people I'm sure that would!! It's a shame tho because we do suffer with others knowing very little about how and why! It would be good if there was some sort of test that could be done to prove that a person has this condition?? Probably a long way off from there yet though?

      Hope you all have great day

      Thoughts n hugs

      Jane

    • melissa30395
      melissa30395 jane218p

      Posted

      no you dont even hear about irt on the tele in the papers in magazines its like it doesnt even exist i never heard of it until my doctor mentioned it to me and i couldnt understand what he meant until i went the hospital and the rheumotoligist said i had it and sat me down and explained it to me it took me months n months to even understand what they meant i just couldnt get my head around it i still find myself questioning how can it be this bad?!

      I love having a hot bath because for them 20-30m minutes its amazing but not so amazing when you try to get out and hurt yourself and have to sit on floor to dry off

      thanks you too

  • deb97936
    deb97936 melissa30395

    Posted

    I've had this since my Car accident where I got compression fractures in my thoracic spine, crunched up my whole of neck and lower spine, and head trauma issues.  Central nervous system they said had also been compromised.  BUT our system here in NZ craftally wangled out of 'any assistance' for head trauma bar paying for my glasses, which I had to get because on the day of my accident I lost a large junk of eyesight accommodation.  I never ever wore glasses as I never needed to.  I had perfect long and short distance vision.  I had really really good vision.  BUT bang!  immediately affected and I never recovered my eyesight loss.  The system paid for my glasses and that was it! poof... Even denied me assistance with my speech, fatigue, memory etc... even though it was 'their chosen Neuropsych' specialist that tested me over 4 days battery testing...  Shocking absolutely shocking!!   and to think we 'Pay' their salaries etc....   Any way it's taken over 10 years for my speech and memory to improve, but I still have processing delay and the fatigue doesn't help the head. 

    The pain and 'Rigamortis' I call  it has only gotten worse.  The more I have strived to keep active over the years as my mobility got better, (as I wasn't able to walk without being helped for weeks and then I found I dragged leg and my arm was always locked bent at the waist.  I perservered myself and slowly got my arm better and could use it better, took a long time, about 5 years.  My leg improved but left with a very slow walk (Brain), and the leg still slows up most days especially if my body or lower back is 'Pained, fatigued and stiff'.. Doesn't help with my balance either.

    However in better times after a recovery period I was able to push through my pain somewhat and walk really good distances.  Once I even had a small lightweighted pack on my back which I modified so it didn't put pressure on my neck muscles and my lower spine and I did a 4 day light walking trip, slept in my tent.  I was in a lot of pain and lived on painkillers which it's hard to know if they help or not..hahaha because of the pain your still in!!  Anyway, as the years have slipped by the worse I have become for pushing through pain to try and keep active.  I even had a home gym and big X Trainer which was great, but again could only do so much at any time and was limited, but it was good.  Didn't stop the Flare ups though.  And NOW, I have absolutely NO Recovery time at all.. I just go from really bad painful stiff days and nights, usual fatigue whether I get to sleep or not, and all the other incidentals to then  morph into MAJOR FLARES that  an take days to weeks to come down from and now everything just settles back to painful stiffness, bad balance, weakness, fatigue, and s l o w n e s s, which has become my upgraded state of normal now...  till the next flare.

    It feels like or seems like, I only have to look sideways once to often and Boom Bang' I'm back all Flaring up again...  Driving me up the wall.  Honestly I don't know if I can survive putting up with the 'not being able to do for myself' for much longer.   I honestly wonder when if or when I'm going to crash and burn and 'Never recover' from a Flare as it's gotten so bad in the last four years.  Or wonder if I'm going to wind up in a dam wheel chair all stiffened up with the chronic pain and nausea.....!!!!  Sorry just a wee grizzle as I am so dam tired and sore....  

    • melissa30395
      melissa30395 deb97936

      Posted

      Hi deb

      I am so sorry that you have had to g through all of that I know that the Uk have a fairly good nhs service dont know how they are  where you are but that is awful how you have been treated. For a person to gothrough so much trauma and too be scared and trust the professionals and to be let down its not good enough! these major flare ups that you talk about when you have them are you like me?? i get so upet its unbearable i cant control my temper everyone gets it even my poor doggy and my cat! i had such a bad day yeterday i just cried and cried and cried it felt like my heart was physically breaking and my boyfriend said he was scared he didnt know what to do. I get so low its unreal and its so hard to pull yourself out of it

      I totally understand whatyour saying about the not being able to do it for yourself i get so embarrased and angry that i cant do normal thiongs simple things and i tell my boyfriend that i hate that he met me at my worst because i am not me anymoresad

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