1. Community
  2. Bones, joints and muscles
  3. Fibromyalgia Syndrome

been u well and in pain for over a year

Posted , 4 users are following.

bella30
bella30

Hi all

It started a year ago i became extremely exhausted sleepin through the day goin to bed early on a night. Pains all over my body migraines back neck shoulder pain. Pins n needles in my arms hands feet legs but more like pin pricks..also had pain in my thigh one night and when i woke up the next day there was a weird pinprick rash in two lines on my thigh..... confused......

These last few weeks iv had really bad pain in my left leg it started of just tender if it was pressed like a bruise feels but there was no bruise there. I went to the docs e said ye it looks inflamed a little and that was that nothing done. Anyway these last few weeks iv had really bad pain in that same leg its my lower inner leg also a poppin feeling behind my knee and like a pulse in my calf . And today pain started in my left arm and wen i rubbed it i can feel like a swollen bulge/ lump. Also been having palpatations all week. I also suffer with ibs. Depression anxiety too. Feel like its all getting worse but my doctor is just not listening to me. Feel like i bangin my head against a brick wall arrgghhh also my mouth swells up alot and my salavary glands swell too. And high inflammation shows up in my bloods too. Also really bad memory sometimes confusion. Im only 30 year old and feel alot older 😩

Thanks xxxxxxx

0 likes, 15 replies

15 Replies

  • bella30
    bella30

    Posted

    I also have tmj my jaw is really painful too...
  • deb97936
    deb97936 bella30

    Posted

    If your GP is not being of any REAL assistance...I would be asking for a REFERRAL to a Specialist...  OR when in absolute pain etc take yourself off to A & E dept demand to know what is going on....   

    Can you afford to take yourself off to a Neurologist or Rheumatologist..?

    I have been reading where the SYSTEMS round the globe, the trickle down to GP's and Specialists now are using 'denying techniques, fobbing folk off etc'...  

    Does make one wonder exactly 'what the heck is going on'..    They know folk suffer issues, they know there is yet to be any Cures come about, as yet obviously they haven't got to the core of what causes Fibro, just like they have no real answers about other brain conditions MS, Parkinsons etc...which are all in the SAME Big Bucket.   Whilst the Systems step up and assist primarily those with MS, Parkinsons etc...   FIBRO sufferers are being shunned...????   WHY is this??????

    Very suspicious

  • delores08034
    delores08034 bella30

    Posted

    First off, get a new doctor. I know the feelings that you are having, pin prick, if you just touch the area it hurts etc. You have to find a doctor that will take you serious otherwise you're in a losing battle. I've had it for 15 years now from a car accident. It turns out that I had 5 herniated disc in my neck and they hurt plus the pain runs down my back. Mainly my upper back, neck and shoulders hurt but when I'm in a flare everything hurt. Right now I have a mild headache, my thighs, arms, neck buttocks and back feel like they're inflamed with aching in the neck and shoulders. It's horrible. If I had a worst enemy I wouldn't wish it on them.
    • deb97936
      deb97936 delores08034

      Posted

      Hi Delores     With you on the neck business...  neck compressed, broad based disc bulges, osteophetic lipping, bone spurs, loss of disc and verterbrae height.  From repetitive compression.  Head forced at speed/Gforces into hard surfaces inside the car, spine forced up into the head, and the hardest bones to break in the spine are the Thoracic.. Mine received compression fractures..

      My lower back also recieved trauma.  So live with the resulting nerve pain etc, and the head trauma issues.  Fibro morphed very early obviously.  13 yrs for me.  

      You have discribed the same issues.  My hands and fingers swell and my head to hands gets the 'Gap'..  which obviously is from the brain.  My hand become totally useless, meaning I am unable to get the message to my hands to move my fingers and I have loads of pain in my arms, neck, face, head, shoulders....various headaches, dizziness, and bad turns.   Also Uncontrollable body temps, Pressure on skin etc.

      Now however the same issues are affecting my Legs..  My lower spine is definately mechanical, my hips lock, my legs pained and my muscles etc lock up in pain and painful aching like my arms, the same weird shimmerings, pins and needles etc...  My ankles become extremely painful to, regardless of swelling.  Toes and fingers in such pain.

      Chest pains, and seering internal pains.

      What drives me up the wall is now it's ALL of the above every dam day!!   If I now try to push through these issues,  I bring on the Flares within minutes, not half a day or a day or two.  

      It's now a matter of walking a tightrope...   

      It's now become a point of having to reduce the amount of physical activity because it's counter productive.   

      I used to have my own gym, I used to try and complete reps, when body able..some months were better than others, some recoveries took weeks into months, but never ever have I had 'remission'...apart from nearly one week back in the early days, then a half day x2 if I remember correctly.  OH Boy what that ever HEAVEN... to be out of pains, to have my head back and to be ME FEE of it all..  DAM the fact it was all so short lived.  It blew my mind these experiences...and of course I didn't know about Fibro then.  Specialists scooted round the issues telling me they are aware folk suffer like myself, and how little they now of it, how they don't have the answers and no way to cure it all..Yet, BUT what really grates on me now is that NOT ONCE was I ever told by these Specialists 'its Fibro'.!!??   One has to 'Question their ethics, and the Political interventions that are prohibiting these specialist from 'fronting up' with honesty for their 'Patients!!'...   Instead of leaving them to 'Hang'...

    • deb97936
      deb97936 delores08034

      Posted

      Also Delores... I have said the very same thing. 'I would NOT Ever wish this conditon on anybody, NOT even my worst enemy'..  

      It's a very cruel, cruel conditon to have.  My Prayers are that none of my extened family, child and grandchildren EVER get this condtion, nor friends.   Utimately that NO One should ever acquire it, and that those that have can have a Cure..   

      May we keep the Faith in the Researchers to find the causation and Cure..   All support and Power to them

      Cyber Hug... 

    • bella30
      bella30 deb97936

      Posted

      Thanks for ur reply

      I was also in a car accident in 2012

      I was in hospital a week. Iv got a metal rod in my lower right leg from my knee to my ankle and screws and bolts. Also suffered whip lash bad back neck shoulders. And a head laceration which i gwt crawling sensations around that area at the front od my head.

      Iv been used to the pain from my right leg but now my left leg is in more pain than my bad one. I went to a & e one time bcos i was that bad with everything i really thought i was dying. Anyway the doctor there said i need to be referred by my own doctor to a neurologist. He was writing a letter to him n i made an app to c my own doc and he said i know what a neurolugist would give u and just prescribed me amitrptiline. Hes so unprofessional im not leaving that doctors today xx

    • deb97936
      deb97936 bella30

      Posted

      Hi Bella...  you mentioned the 'Whip Lash'... Yes I had massive head whip lashing.  So so awful.  I remember feeling like my spine and all attached to it from between my shoulders was being stretched and torn up and away, and the burn is horrendous..~!!   Not just once but several really bad whiplashes..and the feeling your neck is going to snap at anytime..   The most awkward and painful being the sideways or the type where your facing at 10ocl and your head whips forward and back in this 'unnatural' way.. the verterbrae not being designed to manouvre that way at alllll   crunch....  the pain is horrible!! deep and it lasts!   Just like the whip lash, it leaves it's dam after issues...  I get the creeping nerve sensations to, round my head laceration, but I also get it in my face and over half my head.  It's a very definite line where the other part of my head and face is normal and the other not.   I get electric zaps in the back of my neck and tongue to with peeve me off..  dam annoying.  Other niggly cold pain in my face...   I feel for you, I know how bad the neck/head and shoulders etc etc can be..really debilitating..!!  I can't take the amitripiline, it absolutely sends me off the planet, I'm chemical sensitive, but truth, that stuff doens't do anything for me. Take  care Bella...   All the best going forward..
    • bella30
      bella30 deb97936

      Posted

      Thankyou very much same to you too.

      Xxx

      Omg iv had electric zaps for years but they have stopped since iv been on sertraline if i miss a dose they are back they are awful feels like tha zaps go up my spine in to both arms and in my head and face. I never got no further forward with that either by chance i was put on sertraline for anxiety and that stopped the zaps. My doctor told me that i come to him with all these weird things as if im a weirdo or something. Im there at 11.30 today xxx

    • deb97936
      deb97936 bella30

      Posted

      Well you tell him your not weird at all...  Your not the only one to suffer the Zaps...  I have had the Electrical zaps down my spine to..  but I don't get it so much now..  just the odd zap in the back on tongue to the side and inside of neck... really weird and annoying...
    • deb97936
      deb97936 bella30

      Posted

      Oooops forgot to say....Good Luck at the Doc's today!!   All the Best!
  • bella30
    bella30

    Posted

    Thanks for all ur replies really helps just talking to other people who suffer the same. Im in th uk xx
  • chrissie72261
    chrissie72261 bella30

    Posted

    hi bella i feel the same as you but im waiting for surgery for rheumatiod arthritis  but my problem feeling cold and hot all the drinking plenty of fluid say i was dehyrated but blood test come negative feel exhausted depressed sleeping constant pain aching all over  but GP cant help  rheuamatology dont help cos im on alot of tablets  they wont risk anymore no ones listens except went for op on my foot but found i got ulcers on my bottom  but they seem to understand more a fibro  memory not brilliant  im older im 60 
    • bella30
      bella30 chrissie72261

      Posted

      Hi chrissie

      Hope your ok.

      It really feels as though ur goin crazy dusnt it. I hope u get some were with it all. Its seems as though they dont want to diagnose ppl with these things try and fob u of try and tell u its all in ur head etc....xx

    • chrissie72261
      chrissie72261 bella30

      Posted

      hi there very true try and fob you off good luck to yoiu toxxx
  • bella30
    bella30

    Posted

    Hi everyone iv been to docs

    Wrote a list down of things that have been happening for the past year gave him it e said well i none of these symptoms fit in to anymedical conditions.... e said what do u think itis i said i dunno... but i want to c a neurologist.. . Hes reply... im not sending u to a neurologist..... any way i said what even the docs at a& e said i should be referred to a neurolugist by my doctor that must of made him change his mind... he said il send u but i dunno what im goin tosay why im sending u for i said well say all the things that have been happening to me tha ast year and tha list iv wrote dwn. .. il send u bit i dont think they will find anything i think its ur way of dealin with things.... ehhh how can it be my way of dealing with things wat u tryin to say its all in my head noo im in actual pain seriously im really peeeeed off with my doctor...... anyway he upped my sertraline to 150mg and have to wait for neurologist

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.