Seronegative RA with OA in the Lumbar and Cervical Spine

[Hopeful66]

I have a diagnosis of Seronegative Rheumatoid Arthritis with underlying Osteoarthritis in the lumbar and cervical spine.

My question is one of exercise - The GP has made a referral to Physiotherapy - I'm expecting that this will take a while for an appointment to come through, in the meantime I'd love some pointers re moderate exercise - I have some pretty decent exercise equipment that I have used historically up until 6 months ago, exercise bike, rowing machine and treadmill, (rowing machine is certainly out - slight problem getting on and off!).

At the moment I am down to 10mg Prednisolone for the next 3 weeks tapering by 1mg increments every 2 weeks until I'm down to manageable inflammatory/pain, (RA), and 50mg Diclofenac Sodium x 3 daily for the lower and upper back pain, (OA).

My problem is that there seems to be a conflict re exercise - if I've kept on the move on and off throughout the day my back and neck pain is awful by 8pm, if I take it easy the inflammation/stiffness/pain in the joints is more noticeable - Is there a happy medium - or am I jumping the gun, should I wait for the medication to level out - It's been a month since I restarted the Prednisolone, the GP has made herself comfortable sitting on the fence here.

[AgedCrone]

If you can afford it….you need to bite the bullet & pay for a few physio sessions where you will be given exercises designed just for you,

I had surgery on my cervical spine when I was around your age at around the same time as RA diagnosis and my painful lumbar region is kept under control with exercises also prescribed years ago.

No fancy equipment has been advised…just the right movements & stretches performed regularly …at the beginning in front of a mirror…because unless we see what we are doing…..most people do not move the way they think they do.

You would be very unwise to listen to advice about exercises from unqualified strangers who have no knowledge of what you really need

So check the NHS Physio waiting list …& proceed from there.

You can can find a self referral physio form at your local hospital on line. That can sometimes be successful.

[Runrig01 in reply to AgedCrone]

I agree completely re private physio. I already have lots of issues with my spine and joints due to AS. When I injured my knee last July, all Drs were more concerned with my spine, when my knee buckled under me. It took ages to get an MRI of the knee, which showed a multitude of problems. Initially I focused on strengthening my quads, before I had the mri report, but found it seemed to be aggravating my patella tendon. My gp did refer me for physio in October, when we had the mri report, but there was a wait. So I decided to see a private physio, who was able to modify some of the exercises I’d been doing, and was well worth the £50 fee. I actually just seen the nhs physio last week, having been waiting 4 month. Unfortunately I’m due foot surgery in just over a week, so some of the exercises, like squats I won’t be able to do, He kindly arranged 1 to 1 sessions to start 6 weeks after my op, to work on the different issues in my knee. I would also be cautious following exercises from people here, who don’t know your personal situation. It is a catch 22, as with OA it is worsened by exercise and eases with rest, whereas RA is the opposite. I have a similar situation with my knee. I have ankylosing spondylitis, which has shortened the tendon and resulted in my knee caps being partially dislocated. This meant the knee cap wasn’t in its groove, so has resulted in severe OA in the knee. This is part of the reason I booked a private physio to guide me whilst I waited for my nhs physio appointment. Frustratingly despite seeing my GP, rheumatologist, 3 different A&E Drs, the first person to fully assess my knee was the physio last week, 7 months after the injury. It’s been frustrating as haven worked many years as an orthopaedic nurse, I’m fully aware of what a knee assessment entails. My gps assessment was asking me whilst sitting in a standard chair to straighten my knee, whilst she placed a hand on my shin, and concluded there was nothing wrong with my knee, it was coming from the spine when I fell, despite the fact my fall was caused by my knee pain and it buckling. Sorry for the long response 😂.

[Durrell]

I’m with agedcrone here, I don’t have back issues, but my neck is as stiff as a board, causing trapped nerves, which is sending tingling sensations to both arms & head. I had the dr check first but nothing so I then decided to bite the bullet & see a physio, I was lucky to find a really nice one close to my home, I saw him on Thursday this week & what a difference it’s already started to make. He gave me gentle exercises to do laying down to gain stretch but supported, plus on top of that he gave me a very simple exercise to get my knees going each morning. I have just joined our local gym I’m 3 weeks in & my movement is considerably better, though knees still sore but that will be on going though he said keep going, consistently is far better than quantity, so a little everyday building slowly, listening to your body. He also advised on what to use & tips on how to make them more user friendly for my knees (bone on bone/osteo). But I remember being told along time ago motion is lotion, once I move better I’d love to join a stretch class but not quite yet, I’ll keep doing what I am doing.

[Spanelmad]

You may do yourself more harm than good without the correct posture positions for your particular back issues.I know in my experience of degenerative spine, S1 nerve and scoliosis.I needed the private physio if I'd waited for the nhs not sure were I'd be

[OldTed60]

Hi. I’m replying because, although I’ve different autoimmune diseases to yours, I was originally misdiagnosed with seronegative RA. I too have spinal osteoarthritis in cervical and lumbar spine. My neurologist has finally landed my spinal issues, having failed to pick on on the extent of them initially and misdiagnosed a conversion disorder, despite me having Sjögren’s, Raynaud’s and Erythromelalgia with some related neuropathy. That was about 5-6 years back but still leaves a bitter taste because I’ve been learning how many neuro issues cervical disc disease can cause. But she really does her best for me now, as does my rheumatologist.

My main issues, however, have been a steady trajectory towards GI failure and my specialists failing to work out until last year, that this was caused by systemic sclerosis/ scleroderma, even though I carry an antibody for it. The resulting weightloss should, one would hope, have helped the osteoarthritis in my spine. But sadly it seems to have progressed regardless, particularly in my neck. Maybe carrying a lot more weight in the past has contributed to my lumbar disc issues - but if so I’ve avoided stenosis so far. I keep to gentle walking with my aids rather than anything strenuous and this seems to keep sciatica to minimum for now.

I was also told by a scleroderma expert rheumatologist I saw privately last year that I’m also very hypermobile and this explains my thoracic scoliosis. I asked him about physio but he said due to my contrary MSK problems this would be complicated as I’ve a tendency to hyperextend/ overdo the stretches without realising. It’s taken me 13 - 61 years to get correctly diagnosed for all of this.

So my old exercise bike has now gone to my husband. I now use an especially lightweight rolator for walking on smooth surfaces eg shops, museums etc and a perching stick for more uneven outdoors. I daren’t stand still for long as the referred knee pain later will be horrendous so I use my special rolator to sit if I have to wait or chat. Most of the exercises various physios have given me aren’t cardiovascular - they are for my quads and hamstrings - although the latter tend to be too tight having over compensated over the years.

My left arm is failing to thrive ie pain and neuropathy presently so I daren’t do much arm stuff. My feeling has always been that it’s better to walk for 5-10k daily step count, including up and down stairs and try to exercise my core by breathing exercises I was given by a pelvic floor physio last year. The others I get given by physios over time are in worksheets I’m handed. I don’t trust these to be right for me as they are too generic. I use a small step I was given for shower daily to do simple step exercises from side to side listening to Spotify.

Rather than spend my limited funds on physio I asked a neuro physio I’m under for neuropathy to advise me on good mobility aids for when I’m out and about. She did give great advice but doesn’t work with spinal arthritis and says my problem are too multisystemic for her to advise more than gentle exercise daily, not over extending my knees and arms. The rest ie neck, posture and support while sitting I know about already from experience but can otherwise be found via Versus Arthritis online.

I don’t know if any of this helps you but I thought I’d share because, with multiple conditions like mine (inc 2 rare) I have learnt that physios find me very difficult to work with on the exercise front. The best advice I’ve had is use the right aids and trust your own instincts on what feels right to you. If I had the funds I’d go one to one to a good Pilates instructor but presently I don’t have funds and am fairly homebound due to my severe GI problems. Good neck and lumbar support and mobility aids when out seem key. I’m waiting on results of another MRI of neck to see if I’m needing surgery now for cervical stenosis so maybe a bit further down the line to you. My advice- keep moving but go gently.

[Titch55]

I have RA and osteoarthritis of whole spine. My consultant recommended physio led Pilates . I have been doing private 1-1 for over 10 years now and it is what keeps me moving and my sciatica has gone! She works on specific issues as they arise and sometimes if I have a real problem it just turns into a physio session. I do a combination of mat and reformer pilates with her. It is well worth the expense. I did a short spell with a non medically trained Pilates instructor and she did things with me that my RA body should not do and made things worse, so now I stick with a physio.

[Whitegate]

In 1990 after six weeks of being totally unable to walk, L5/S1 disc was removed. For the next 30 years I was able to do sport, strenuous gardening and everything. However, during the last six months, lumbar stenosis has caused minor lumbar back pain. a serious limp and sciatica. Whilst I await an MRI, should I minimise walking and light work around the house?

[Nuttyshirlz]

I started to do Pilates on a board I only go once a week because it’s so busy, but needs pre booking. I also just hold my support rails at back door and do step ups and I’ve a flexi bar but can’t do that much. I bought a mini bouncer for indoors but my grandkids use it more than me lol

[1bozyact2]

I do water exercise ( aquacise and aqua Zumba) it's easier on the joints and spine.

[Southwestbysouth]

The more exercise we do the stronger our muscles, tendons and ligaments which means less unwanted movement on our joints. I unknowingly had RA which caused lung decease for 30 years, an anaesthetist recently said I must have done a lot of exercise, I’ve been doing watersports for 60+ years, I think that’s a recommendation to carry on! Maybe at a slightly different rate?

[Southwestbysouth]

I should have added that exercise should only be to the limit of what we can achieve without pain, so one person might sit and lift a can of beans another might take a walk in the park. Otherwise we would be into that well known syndrome of ‘boom and bust!’