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I've had mutiple joint pains for 7 years and still no diagnosis dont know what to do

Posted , 8 users are following.

sabrina12374
sabrina12374

Ive had pains in my knees mainly left which is now icreasingly getting worse and hard to walk and gives way now and again, impingement in my right shoulder since may 2014 and xrays have shown my neck is spondilitic but i have pains behind my shoulder blade midlle andlower spine, fingers wrists elbows and i dont seem to be getting anywhere with a diagnosis or help with it. iv had xrays and blood tests and nothing else is showing up and was on diclofenac then it got changed to naproxsyn which makes me sick so now just taking ibuprofen and paraceautomol. i cant sleep at night as the pains are keeping me awake and feeling depressed and very tired also very stiff movement can anyone help with what i should do ?

1 like, 16 replies

16 Replies

  • MrsO-UK_Surrey
    MrsO-UK_Surrey sabrina12374

    Posted

    sabrina, there are many inflammatory and auto immune conditions that cause pain in various muscles and joints and sometimes just a Vitamin D or hormone deficiency can be the culprit.  If you are older than your late 40's, one possibility is Polymyalgia Rheumatica which can cause stiffness and pain in the shoulder and hip girdles, lower spine and front of thighs.  There is no specific diagnostic test, and whereas many patients have raised markers of inflammation showing in their blood tests, 1 in 5 patients never have raised markers.  The only treatment that has been proven to work is long-term steroids.  It doesn't respond to Ibuprofen or Paracetamol.  If you haven't seen a rheumatologist, then do ask your GP to refer you to one for his opinion. 
  • Gizmo1963
    Gizmo1963 sabrina12374

    Posted

    Hi Sabrina, as Mrs O says. The best person to provide you with a diagnosis is a rheumatologist. Polymyalgia Rhuematica is usually found in people of 70+ and very rarely found in people under 50. I have cervical and lumbar spondylitis and also have widespread osteoarthritis which could be the answer. My other thought is fibromyalgia which I have also been diagnosed with. I wish you luck with finding out exactly what is causing your pain and hope you can then find a suitable route of treatment x
    • margaret22251
      margaret22251 Gizmo1963

      Posted

      Hi  you say PMR is only found in people aged 70 plus, well i can say i started  early, from all my symptoms i bet i was in my late 50, and it was found, because it was suspected i had bone cancer.

       

    • margaret22251
      margaret22251

      Posted

      Thankfully it was not bone cancer, but other tests found PMR and i have been treated for it since January 2015.
    • MrsO-UK_Surrey
      MrsO-UK_Surrey Gizmo1963

      Posted

      Gizmo,you state that Polymyalgia Rheumatica is usually found in people of 70+ and very rarely found in people under 50.  That statement could be miscontstrued - although the average age of onset has been quoted as being around 70, there are a whole host of patients diagnosed with PMR in their late 40's and any time thereafter, and the number of younger people affected seems to be growing.  As Margaret has said, she was in her 50's.  Unfortunately, many patients are left to suffer because doctors believe they are too young.  I apologise if this sounds pedantic but the right message needs to be circulated in case anyone 'looking in' dismisses a possible diagnosis because they are too young.
    • Gizmo1963
      Gizmo1963 margaret22251

      Posted

      Hi Margaret, sorry it has taken me time to reply but have been struggling the past couple of days. I to for a while thought I was going to be diagnosed with PMR but was told it usually occurs in people older than myself. I am 52. I then referred to various websites like the NHS one for example and it states the following: Polymyalgia rheumatica is age-related. Most people who are diagnosed with the condition are over 70. It's extremely rare in people younger than 50. It's also more common in women than men. I did not say it is only found in people over the age of 70 at all.

      I myself am diagnosed with cervical and lumbar degenerative disc disease, widespread osteoarthritis, bursitis and tendinosis in my left shoulder and hips and to add to this I have hypothyroidism, high bp and cholesterol on top of fibro. My rheumatologist and pain specialist cannot tell me why I have all these issues but when I asked if it could be PMR when I was in my late 40's I was told no. I'm still not convinced. I'm pleased you were not diagnosed with bone cancer Margaret as I have a dear friend being treated for this at the moment and it's terrible to go through. I myself carry the brca1 gene and lost my mother to cancer when I was in my teens. Sorry for rambling on a bit, just a bit down at the moment. Wishing you well, Paula

    • Gizmo1963
      Gizmo1963 MrsO-UK_Surrey

      Posted

      MrsO-UK Surrey, I have replied to Margaret above. I do still wonder if I do actually have PMR and may ask to be referred to a new rheumy as my I planarian markers have been raised for the past 3 years. Blood tests are always between 33 and 64.  I was even put on methotrexate last year which lowered my markers a little and was taken off the drug about 4 months later. 
    • margaret22251
      margaret22251 Gizmo1963

      Posted

      Hi Gizmo, i am so sorry you are not well, my reason for saying people under 70 get PMR was to try and get you to see a doctor who could help you, i have a brilliant doctor at the moment, she really listens to me, and is learning herself about this illness. Please do see if you can get somebody to listen, i dont know a lot only what i am learning from the wonderfull people on this site, we are  here for you so keep in touch, hope you have a good day. Take care regards Magsbiggrin
    • MrsO-UK_Surrey
      MrsO-UK_Surrey Gizmo1963

      Posted

      Paula, I'm so sorry to hear of all the problems you are experiencing, having been diagnosed with cervical and lumbar degenerative disc disease.  I have spinal problems myself (spondylolisthesis) but at least so far just the lumbar spine and a lower disc is involved.  Although when first diagnosed many years ago, the hospital fitted me with a surgical corset, that no longer fits and the replacement was most uncomfortable so I now resort to wearing a simple panti support girdle which works a treat within a few days when my back goes into spasm.  Would that perhaps be of any help to you, particularly for the lower spine?

      You haven't said what treatment you are on, but I'm wondering if at least you are having or have had any cortisone injections into your shoulder or hip areas to help with the bursitis/tendonitis pain?

      Have you ever been trialled on a short course of the steroid, Prednisolone, to see if your symptoms responded to that?  If you suspect PMR, then that would give you an answer.

      A second opinion from a different rheumy might be worthwhile, especially if those bood test markers you are referring to are ESR and CRP.  A reading of 64 in either of those is certainly a sign of uncontrolled inflammation.  Whether that is down to degenerative disc disease, PMR or another auto immune condition under the vasculitis umbrella, another opinion wouldn't go amiss, including perhaps that of a vascular consultant.  I do hope better days are around the corner for you - good luck! 

    • Gizmo1963
      Gizmo1963 MrsO-UK_Surrey

      Posted

      Over the years I have had cortisone, synvisc and even Botox injections into my cervical and lumbar spine, shoulders and hips and also radio frequency denervation where they bur away the nerves. Whilst I was able to work I had private healthcare so was able to be under some top specialists but all say my condition is extremely complex. I am to start physio and OT Gain under 2 different hospital whilst being back on the list for injections and denervation which I've not had for a while now. I no longer am able to work and spent almost a year being unable to leave the house without help from my husband. I really do appreciate your support as although I have some great friends, it's so hard to explaine how you feel to someone who is not living with daily pain and disability. Have a lovely day biggrin

      btw yes, my esr is always high and no blood tests I've had in the past 8 years have been bellow 33 and sometimes is as high as 67. Crp falls between 7 and 17. Methotrexate brought it down but doctors were not convinced I should be taking this drug due to all my other illnesses.

    • Gizmo1963
      Gizmo1963 margaret22251

      Posted

      Hi Mags, one of my more recent diagnosis was undifferentiated connective tissue disease to add to my long list. I am fed up of different consultants with different answers so have managed to get back under the care of the London Pain Clinic who will be repeating injections I had a few years ago plus doing radiofrequency denervation. I hope you have a good day too biggrin
    • MrsO-UK_Surrey
      MrsO-UK_Surrey Gizmo1963

      Posted

      Paula, you mention the London Pain Clinic so if you are around the London area, you continue to feel suspicious about your diagnosis and still wonder about PMR, and ever feel in need of a second opinion from a highly recommended rheumatologist, there is a brilliant one at St Peter's Hospital in Chertsey, Surrey.  He has a special interest in PMR and is involved in research.  
    • Gizmo1963
      Gizmo1963 MrsO-UK_Surrey

      Posted

      Thank you so much for your recommendation and will definitely see if in the future I can get a referral to St Peters. I am also under Royal National Orthopedic Hospital in Stanmore.

      Sabrina, I want to apologise to you for being rude and taking over in my hour of need. To me I still think you have a problem linked to your cervical spine and as your discs degenerate, there is probable nerve impingement which I can relate to as I have 4 degenerated discs in my neck. I also have bursitis, synovitis and shoulder joint inflamation so nerve impingement gives me many symptoms for which I am on pregabalin for. You really must see a new rheumy as Mrs O-UK has suggested and have a CT scan and MRI as x-Ray are not detailed enough and after you fall are now experiencing nerve issues. Don't ever let a specialist intimidate you as you know the pain you suffer is real, and something is causing it x

  • sarah87162
    sarah87162 sabrina12374

    Posted

    It sounds to me as if you could do with seeing a rhuematologist and also (and maybe more importantly) an orthopaedic consultant.

    I have had osteoarthritis for 40 years and am now 64.

    I was on diclofenac and naproxen for ages but came off both of them quite a while ago and cannot remember which I found more helpful.

    I think it was the diclofenac.

    I also use Ibugel which you can buy from a chemist or get on prescription.

    Hope this helps

    Take care and keep in touhc

    Sarah

  • sabrina12374
    sabrina12374

    Posted

    Well im only 34 and these problems started when i was 27. Ive just seen the rheumatologist on the 17th july they were looking into fibromylgia but hes not convinced thats what ive got because apparently my skinwasnt tender enough! but it is when ever me and my partner are messing about play fighting he only has to poke me andit really hurts and i can be rubbing it for ages cause it wont go away both my partner and family are rather concerned cause they dont know how to assist me cause they dont know whats wrong. What i dont think the rheumatologist realises is that iv got a high threshold to pain as i suffered with a re-accuring bartholins abcess for 10 years and was in and out of hospital with it and i fell off a roof and smashed my arms to bits but didnt feel the pain and also iv been putting up with these other pains for past 7 years with no help so im not gonnna winch as he said when someone touches me i tried to explain the things to him and he basically said i dont nned to know your past he moved my arms and legs about and that was it and i was in and out of the room in 10 minutes he wasnt much help .
    • MrsO-UK_Surrey
      MrsO-UK_Surrey sabrina12374

      Posted

      Sabrina, for a rheumatologist to comment that he doesn't nee to know your past, not only is he being arrogant, he is also showing lack of interest and professionalism.  Of course, he needs to know your past medical history if he is trying to diagnose a long term history of pain to see whether you have experienced an injury in the past that may be causing your symptoms - the fall off the roof for instance.  

      Have you ever been referred to a neurologist to see if there is any nerve damage, or a vascular surgeon to rule out other conditions under the vasculitis umbrella?  If it was me, I would at least ask for referral to a different rheumatologist for a second opinion. 

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