not been diagnosed with arthritis just need advice

Bensonjack Member Posts: 3
edited 21. May 2015, 17:18 in Living with Arthritis archive
hi, im new on here and am just looking for some advice really. ive recently been suffering with an under active thyroid, which is playing havoc with my whole body. im sleeping all the time, ive put on 2 stone in about 6 months. ive also got horrendous pains in my joints and what feels like nerve pain down my legs. my wrists, hands and fingers are so sore its stopping me working, driving basically doing anything. these pains are also in my feet and ankles and seem worse in the mornings.
i also have this muscular pain which goes from my neck down my back and chest to about the middle of my back and up again, its like a burning agonizing pain that i cant even touch my skin.
im taking naproxen 500mg x 2 daily and pred steroids 30mg daily, as well as the thyroxine 100 daily.
my concerns are that the pains in my joints are arthritis but i had my rheumatoid factor bloods back today and they were neg, i see an endo specialist next wk but dont know if they will assess arthritis or just the thyroid problems.....confused and in alot of pain :(


  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
    Hello Bensonjack

    Welcome to the forums from the moderation team.

    It sounds as though you have a lot going on at the moment and am glad you have found us. The people who use these forums are all very supportive and I hope that someone has had similar experiences and will be able to help you.

    If you have any problems using the boards please do send us a PM.

    Best wishes

    Moderator AC
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
    Hello Bensonjack and welcome from me too.

    You sound to be having a very tough time of things. I'm sorry to hear that.

    Unfortunately we're not medics and can't diagnose anything. What I can tell you is that some forms of auto-immune arthritis are sero-negative so you could still have arthritis. If so, I imagine it would be the rheumatologist who pursued this not the other specialist though they might liaise if things are complicated.

    I've had RA a long time in virtually all my joints but I don't recall the pain going up or down my legs or back just in the joints themselves. I also think you'd be unlucky to be in such a bad way with arthritis and 30mgs of pred making no difference though I don't say that can't happen.

    I hope your endo man can help.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, you do have a great deal going on at the moment, don't you? I have two kinds of arthritis, one a sero-negative form of auto-immune (in my case psoriatic arthritis) and osteo has joined the party thanks to my joint damage. My pain is localised in the joints and surrounding areas but it certainly doesn't travel in the way that you describe. As Sticky said, we cannot tell you what is going on with you because we are not doctors or rheumatologists, just knowledgeable patients.

    I advise that you keep a brief diary of symptoms, what helps or aggravates matters, tiredness levels, pain levels, diet etc. so when you next see a medico they may gain a better over-all impression of how you are being affected. GPs know a little about a lot, they are not specialists and yours may be unaware that sero-negative forms of auto-immune arthritis exist - when my troubles began in 1997 mine hadn't a clue! I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Hi Bensonjack

    It is good that you are seeing an endocrinologist. Some of the symptoms you mention are symptoms of an underactive thyroid ie tiredness joint aches and pains .....

    You do not say how recently you were dx with an underactive thyroid and if it is early days the thyroid script may need a litle tweaking until the correct daily amount is sorted out for you.

    As DD says, make a note of all your symptoms and whatever you feel may help the endocrinologist, help you.

    Do let us know how you go on after your appointment. I have been taking thyroxine since I was 16 years old after removal of a nodular goitre and have been on it for years. I am 64 now. I do have osteoarthritis but that came much later on in my life.

    Look after yourself,

    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • theresak
    theresak Member Posts: 1,998
    edited 30. Nov -1, 00:00
    Hello Bensonjack,

    I`m sorry you are having such a tough time at the moment, it must be very difficult for you - it`s no fun dealing with constant pain.

    I`m glad you see one of your specialists next week, and hope you will get some answers then.

    Take care, and let us know how you are doing.
  • frogmorton
    frogmorton Member Posts: 29,645
    edited 30. Nov -1, 00:00
    Hi Bensonjack

    I can see Elna has already said what I was thinking. I know thyroid issues can result in joint pain too because I did a lot of research when my brother had an overactive thyroid last year.

    I think the first port of call has to be the Endo as you are seeing him/her very soon anyway. If he/she suspects the pains aren't 'his/her' speciality maybe he will support you in getting a referral to the appropriate consultant ,(rheumatologist/orthopod???), when he lets your GP know what he/she is doing as far as thyroid is concerned.

    Chances are the GP isn't appearing to do much as he/she wonders whether it could be connected with your thyroid :? .

    It would be such bad luck to get both issues going on at the same time, but my arthritis, inflammatory means I do not have positive R factor either. Bloods aren't the answer to everything.

    Best of luck for next week and in the meantime we are here and will support you with advice on any practical issues if we can.

    take care

  • Bensonjack
    Bensonjack Member Posts: 3
    edited 30. Nov -1, 00:00
    hi everyone thanks for the replies, this board is very friendly.

    I've picked up a copy of my bloods today from the gp to take with me next wk to the endo. The GP said there was no inflammation going on but doing abit of research on them myself i can see the CRP level is 5 and marked as high, inst this an inflammation marker? (i'm clueless so could be way off the mark here)
    Other things that are high are white blood cells and neutrophil count.

    relating to my thyroid my tsh is 94, and free t4 is 3.5, also my antibodies are off the scale.

    with regards to how long this has been going on my throat swelled up 5 weeks ago now and thats when the gp first did bloods. been on thyroxine ever since.

    thanks for all the advice already given its good to just talk to people about this as its all alot to take in.
    thanks x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    You're right, it is a lot to take in when one gets the results - interpreting and understanding them is a skill but as very few patients are fluent in 'medic' they can sometimes raise more questions than they answer. CRP is a measure of inflammation and, by my experience of that ( plus another measure called ESR) and from what my hospital have told me, five is a very reasonable level.

    I suspect your troubles lie in other areas so please let us know how you get on with your future appointment / s. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • lynnemarie1123
    lynnemarie1123 Member Posts: 295
    edited 30. Nov -1, 00:00

    I too have negative rheumatoid factor, My condition is unspecified seronegative arthritis.

    It took me ages to get a diagnosis because of the negative factor. - you are on the right track and I am sure your medical team will get to the bottom of it xx

    take care of you xx