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Fibro or JHS??

Posted , 7 users are following.

Buzbi
Buzbi

I was diagnosed with fibro in may/june 2014 & i had a rhumes appointment on christmas eve. on arrival The consultant asked me why i had i been sent to him so i stated that i was having trouble with my knees and that my gp seems to think its fibro. He took me to a room and did some checks after he had finished checking me over he said i had anterior knee & that i was hypermobile/hypermobilty and i said well whats causing all the pain and fatuige he said oh well that will be the fibro i shall send u a leaflet in the post. End of consult :-( I came home and decided to do some research and i think i may have JHS Joint Hypermobility Syndrome as my joints give me chronic pain and grind and click all the time the sympoms seem the same so i think its be mis diagnosed as fibro. Dont know what to do from here.

1 like, 9 replies

9 Replies

  • christine26761
    christine26761 Buzbi

    Posted

    I have had Fibro for 22 years now-well diagnosed then.!!!!  Fibro, I had to have a knee op..torn knee ligaments removed...it was  bone on bone....all wearing away and torrn ligament, so they removed it 2 years ago now, but it was from arthritis not the Fibro...apparently it's genetically...most of my family have it..but as your doc says it's not from the Fibro..it does take a while to get sorted meds and diagnoses, but you are not alone...I do a lot of research too...it helps.:-) xx stay strong,,
  • tiswas24537
    tiswas24537 Buzbi

    Posted

    i think its a case, of could be,  maybe, well we dont know, lets choose this that will do . i have had fibro for 10yrs and this yr my knees have been kind of grinding

    when i turn over in bed they kind of grind and lock and it hurts , 

    i dont know if its my fibro all something eles and to be honest until my knee locks and i cant unlock it , which will be agony, i cant be bothered with my gp they just make me feel totaly negative  about myself they always pick on my weight which iv only gained since having fibro i no weight dosent help but i just cant do enough excersise to loose weight  , i am not a big eater i dont have a sweet tooth  

    they make me feel like i just sit around all day eating , spmedays i don thave the energy to eat my breakfast till about 1pm then i have my dinner 

    i thinkit says it all when you go to see a specialist which your gp has organised and when you walk in he asks you why your there . hope you get it sorted .

     

    • grantb
      grantb tiswas24537

      Posted

      Happy new year to tis. I'm not a doctor but there are many, many symptoms to fibromyalgia. I wake up with a different one each day. I was referred to a group session of around 10 people who have fibromyalgia.  Everyone in the group had the same symptoms. One condition I didn't expect was my fear of leaving the house! When out I would be fearful of seeing people I know and the embarrassment of forgetting their name, or the way I walk. 

      The group was focused on pacing and exercise, feelings and living with the change in energy levels.  When you have energy not to use it all up on the rare days you feel good. My advice is to hound your GP to death. Get on medication that suits you and not what the GP thinks may be ok. Insist you get help from professionals that deal with this on a regular basis and get on one of the group sessions. If you would like I will send you some suggestions for medication I have tried and contact details for the courses.  Depending on where you live. Regards. Grant

    • christine26761
      christine26761 tiswas24537

      Posted

      I also had big problems with my knees, it ended up that I had torn cartledge which I had removed-the specialist said it was bone on bone from Arthritis,,,,who knows if it was Fibro.,I'm just hanging on there as I was also told my other knee was as bad...this was three years ago now and so far it hasn't bee a huge prob.,anything nit to go under the knife I suppose...hope you get some comfort.. Don't worry about how you think others look at you about being lazy,,it's their problem not yours, don't  you own it....they have NO idea of what your going through, be strong..:-) xx
  • grantb
    grantb Buzbi

    Posted

    Hi Sandra.  Happy New Year. I have replied to tiswas24537. You may find this helpful.  Grant.
  • jasmine2015
    jasmine2015 Buzbi

    Posted

    joint hypermobility syndrome and fibromyalgia frquently go together -thats what i have and my knees and feet are extreemly painfull to mobalise creak and grind too when i go up stairs. cycling and swimming are best-no impact like running or gyms the consultant told me. hydrotherapy helps too. you are not alone! good luck and take care.
  • victoria98900
    victoria98900 Buzbi

    Posted

    Hi Sandra,

    ive also got got hypermobility and fibromyalgia -diagnosed in 2010 after over 10 years of thinking I was insane!-test after test said there was nothing wrong?! 

    I'd suffered with excruciating hip pain for years,had x rays ans scans all of which said there was nothing wrong until mid 2014 when I'd had a sacroiliac cortisone injection and the doctor referred me to a consultant for me to have a hip arthroscopy to find out what was going on in my hip joint, he discovered that I had a large laberal tear which was causing the strange 'popping' noises and pain when I moved.

    i had an operation to fix this on 10th dec 2014 and although I'm still within the first six weeks of recovery where I can't weight bear as yet (using crutches with fibromyalgia NOT a good experience!) I can honestly say that I already feel benefit from it.

    just a suggestion but I think I'm correct in saying that you can also have similar tears in joints such as your knees.

    good luck, Vicki x

  • hischild
    hischild Buzbi

    Posted

    Hi Sandra,

    I have had FMS/CMS for nearly 30 years. I see a physician who specializes in treating FMS/CMS who informed me that hypermobile joints are very common among FMS/CMS patients.

    It would be well worth the time and effort to find a physician who treats FMS/CMS for a thorough evaluation. My physician required me to complete and 18 page health history, which asked many questions regarding the wide range of symptoms one has with FMS/CMS. Try conducting an online search for physician who treat FMS/CMS. You may have to travel some distance, but oh does it ever make all the difference in your life to get the right diagnosis and treatment. I travel 4 hours approximately every 4 weeks to see my physician.

    BTW, my neck, knees and ankles grind and I have had hypermobile joints since I was a kid.

    Keep on keeping on; be persisitant. You will find help and treatment.

    Blessings!

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