Oh dear, what a mess.

Starburst
Starburst Member Posts: 2,546
edited 26. Jan 2016, 19:51 in Living with Arthritis archive
I've had RA since mid 2009. I've not had a single day off work for my joint symptoms. There have been days when I've been off sick for other reasons but never directly due to musculoskeletal symptoms. I could not move my neck enough to be in work today and I am gutted. :( I'm particularly worried as I've just accepted to start a job, starting on 21st March. The main things I do for work (laptop and driving) are the things that are making things worse. I have already had a desktop assessment but it's not made a dot of difference.

I've had night time nerve symptoms (tingling hands and numbness) for about a year. Nerve conduction studies were normal for carpal tunnel. I'd been getting neck stiffness and pain, so rheum specialist physio felt it was likely that a nerve is being compressed. I have an amazing osteopath who I trust, so I started seeing him and was discharged from NHS clinic. He's been concerned about how stiff my neck and the surrounding muscles are but felt it was treatable.

In Oct/Nov last year, I noticed muscle weakness in my lower body. I've never experiencing anything like this, saw my GP who said I have every symptom of Polymyalgia Rheumatica. She referred urgently to rheum who gave me a cursory glance (!) and declared me fine. I bumbled along, having osteopathy sessions and just trying to cope.

Recently, my muscles have stiffened even more and I am very weak. Osteopath said he wanted me to be seen by a dr before he continues, as he's concerned that I do show every symptom of Polymyalgia. I made an appt for Feb as I didn't think it was urgent but today, realised that it's really bad. I saw the duty GP this morning and she was quite dismissive, asking me what I thought a general practitioner could do when I've seen a consultant. I did say that the nerve symptoms have got worse, as has my lack of neck movement! I have a prescription for diazepam but that's only a sticking plaster. She said it's probably damage in my neck (and the other weakness/stiffness is referred) but didn't seem very keen to do much about that. I didn't realise this but apparently last year, the rheum had run bloods to check for inflammation and muscle disease, both were normal and that 27 yr olds do not get Polymyalgia, so not to worry and off you go.....!

Advice from people in my life has been to use my private health insurance and get a referral. So now, I'm debating whether I should (privately) get another rheum's opinion or referred back to the orthopaedic spine consultant that I've seen before. Spinal man was great, he only scanned my lower back as upper back and neck were not causing problems back then. I know my usual rheum doesn't have access to GP notes, so she'd never know that I requested a second opinion. I am loathe to put myself through more medical appointments and tests if not needed but equally, I want to be able to live my life to the full and I'm not.

Thank you for reading my long ramble, now I need pain dullers and a lie down.

Comments

  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    How frustrating when you're looking forward to the new job. Only you can decide what feels right for you, but I suspect in your position I'd be considering the private consultation if you can, if only to have a space to verbalise your fears and confusions. What I don't know is how that would sit alongside your current rheumy.

    Whatever you decide, it's your body and your life and you have every right to decide what feels right.

    Deb x
  • stickywicket
    stickywicket Member Posts: 27,101
    edited 30. Nov -1, 00:00
    To be fair, even the reliable ARUK site says PMR 'can start at any age from 50 (my italics, not theirs) but mainly affects people over the age of 60' so not surprising if your GP is dismissive especially after the rheumatologist has run a test and especially as the treatment is much the same as for inflammatory arthritis. But, if not PMR then what?

    I think my own first port of call would be the rheumatologist. OK she ran the tests and was a bit dismissive last year but you now have worsening symptoms. By asking to see her again you still leave other options open. She may refer you to a spinal or neurological consultant and, if so, she would have to work with him re his report.

    My reservations about seeing another rheumatologist privately would stem from the problems I've found on here where people have had two consultants with different opinions. Which do you go with? If you go privately can you afford to keep on going privately?

    I'm also wondering if your symptoms could simply be an indication that you are joining us in the 'doubles club'. Might it be OA? Encroaching on nerves? I don't know.

    I wish you luck and success whatever your decision.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Oh Sophie, you are a one for doing things differently, aren't you? :wink: I've read through your post a few times now and I concur with Sticky: stick with the rheumatologist who knows you the best, be firm in stating the developing symptoms and do not allow yourself to be fobbed off by excuses: it's your body, you live with it 24/7, you know how it feels and is feeling. There is something amiss and it needs to be addressed. ((( ))) DD
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    Thank you for the insight. It's a bit hard to type today, so this will be brief. The advice was great and I was very polite but assertive and asked the rheum nurse to see me. I am going on Tuesday morning and I will take it from there. Fingers crossed!

    I've tentatively booked a private ortho consult for next friday but I will cancel it if needed.

    Thank you all X
  • Numptydumpty
    Numptydumpty Member Posts: 6,417
    edited 30. Nov -1, 00:00
    Hi Sophie,
    I'm sorry things are so rough for you at the moment.
    Good luck on Tuesday, I'm available for pocket duties, strength in numbers and all that :wink:
    Take care,
    Numpty x
  • stickywicket
    stickywicket Member Posts: 27,101
    edited 30. Nov -1, 00:00
    Well done, Sophie. I always find that pain seriously interferes with my decision making so good for you for having grasped the nettle – potentially two nettles.
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    I'm glad I posted here. You helped me realise that I don't want to change rheumatology clinics, I just wanted to be heard. I also realised that I need to be assertive. I do it for other people in my job; day in and day out. It's harder to do it for myself but not impossible.

    The anxiety/stress has meant my stomach condition flared up, so I kept vomiting the nightly diazepam doses. I'm more settled tonight, so hopefully I can keep it down and get some movement back in my neck.

    Thank you xx
  • Slosh
    Slosh Member Posts: 3,194
    edited 30. Nov -1, 00:00
    Just want to say I'm thinking of you and hope the appointment tomorrow goes well. Can't be in your pocket I'm afraid as I have an ATOS appointment.
  • stickywicket
    stickywicket Member Posts: 27,101
    edited 30. Nov -1, 00:00
    It's so true that it's easier to be assertive on behalf of others than for oneself. Good luck, Sophie.
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    I saw rheum nurse this morning and she gave me a thorough examination, which was reassuring as when I was rheum in November, she barely looked at me! She's positive that it isn't Polymyalgia Rheumatica which is excellent news. I did wonder if I had Fibromyalgia but I forgot to ask. :roll: I was told I did have Fibro but then they changed their minds, so I'm not sure where we stand.

    The only thing for me was that when I asked her why my shoulders were so stiff, she said it was unlikely it was bone damage as I am on strong medication. I pointed out that prior to moving hospitals, I was under-treated and scans have shown that I did sustain joint damage. I didn't really get a response to that. However, it isn't going to change the course of my treatment, so I'm just going to have to manage, I suppose. I've been referred back to the wonderful rheum physio and I know she'll have a plan for me. She's brilliant.

    I do think my neck is soft tissue injury and not disc/bone but I would be reassured by seeing the private orthopaedic consultant, so I'm going to go ahead as planned.

    The diazepam has been making me feel very good indeed; nice and chilled. 8)
  • stickywicket
    stickywicket Member Posts: 27,101
    edited 30. Nov -1, 00:00
    Hey, well done diazepam! And the nurse. And, hopefully, the ortho consultant.Not to mention our Starburst who has managed to take a very difficult bull by the horns and sorted things as far as possible.
  • Slosh
    Slosh Member Posts: 3,194
    edited 30. Nov -1, 00:00
    I loved it when I was on Diazepam, it was the only thing that made me pain free but I was gutted when I was only allowed to be on it for 2 weeks.
    Glad your rheumy appointment went well, fingers crossed for your orths one.
  • TrishaW
    TrishaW Member Posts: 109
    edited 30. Nov -1, 00:00
    Hi Starburst,

    It sounds like you may be getting sorted now anyway, but thought I'd just add a suggestion.

    I had a stiff/painful neck for many years (before diagnosis of my arthritis) and got intermittent tingling in my arms, which i put down to 'trapped nerves'

    Then during a holiday where i did lots of breast stroke (with my head up) the numbness got worse and I also developed weakness in my lower body.

    I ended up in hospital having a lumber puncture and an MRI brain scan......

    Turns out my cevical arthritis had caused bone spurs that were irritating my spinal cord....hense the symptoms.

    Luckily with time, rest and good posture etc it resolved without surgery.

    Have you had your neck scanned? (wont show an impingement on an Xray alone) Could you have arthritis in your neck? If you have private health care I would ask for a neck MRI.

    If you have a referral to neurology may be in order.

    Let us know what happens and good luck!

    Trisha

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