The Australian Sjögren's Syndrome Association
1,745 members538 posts

"Significant wear and tear in the lumbar spine", Pilates and neuropathic pain.

Very confused by pain at top of thigh and other night time aches and pains I've been having. I started Pilates class about five weeks ago and the very good instructor tells me to miss certain exercises out because of my arthritis. But as I was told by my old physio that strengthening my core is key to keeping mobile I've been reluctant to do the relatively dull alternatives she gives me.

But afterwards I've noticed that the pain in my feet, ankles and knees is much worse. I think it's mostly neuropathic pain but I've had a bad left groin and now this has moved to my outer hip. I've been here before with my old rheumy and he explained that outer hip/ bum is usually coming from arthritis of the lower back - only treatment is getting weight down and exercise.

Since he said this to me five years ago I have had severe arthritis in my lumbar discs confirmed by CT. But no referral to physio or suggestion that my peripheral pain is related. In fact nerve conduction studies last year say it isn't. Same applies to cervical Spondylitis - it's confirmed but not related to my neuropathy in face or arms I'm told.

So is this post Pilates flaring of peripheral pain and fatigue mean that the exercise is doing me harm or is it a case of no pain no gain does anyone think? I try to walk between 5-10k steps daily but again I do find the pain in my feet and legs is much worse later at night just now. It's bad full stop at present but I keep mobile for my overall health and in effort to tackle the awful fatigue too.

However I am still seriously overweight despite losing a stone over the past few months🙄😜😏 so I really do want to keep trying despite the worsening pain in my peripheries. But I don't want to cause more irreversible damage to my back in the process. Hips can at least be replaced - lumbar discs can't!

16 Replies

Hello Twitchytoes....I had what my GP thought was sciatica a couple of years ago. I had a scan which showed ,to cut it short ,that my spine is rubbish. I saw a Physio a couple of times who gave me the bog standard exercise (written on piece of paper) which I did every 2 hours as instructed but gave up. Core strength is thought to be all important but when I did the standing on one leg, eyes closed test I was a failure !

My v good GP says you can't do much about a crumbly back and DON'T have surgery. I am now usually ok unless I have to stay standing for any length of time ( like waiting at checkouts) then I seize up.

I had very painful legs before I had Mycophenolate but that more or less did for that.

I am also too fat but my GP says forget it I'll never be a sylph ! Having said that I have just lost a stone without trying.

Dr Price is very keen on Pilates,Yoga and mindfulness but I have yet to indulge.

Daughter has just phoned from N Cyprus with problems which has upped my stress level so am hoping my system isn't going to go into overdrive.

So we just keep on keeping on . 😕

1 like

Thanks BB it's really helpful to know the advice you are given. People say "pain is pain" but for me there are many different kinds of pain. I suppose the main thing your reply has confirmed is the standing in queues or chatting thing. I am terrible at decypering pain from other sensory stuff so had been wondering if my worsening problems with standing for more than a minute - if that - were due to neuropathy or autonomic dysfunction. But now you've described yours I know it's the arthritis in my spine! Everything just locks and I feel I must sit down or lean on something or I'll fall! A pal of mine with no particular arthritis suffered from cauda equina and was nearly paralysed - another had to have surgery for fused vertebrae - all so dangerous really. So this is why I'm following the Pilates route and trying to strengthen my core - but the resulting pain and intense fatigue following this relatively gentle form of exercise - seems excessive? I'm 54 - how will I be in my 60s and 70s I wonder?! Glad to know Dr Price would approve though!


Perhaps like me TT !

On a couple of occasions in the supermarket when I leant on the checkout the alarmed till girl has asked if I'm alright because they had a first aider ! I slowly unfurled and assured her I was fine ! She meant well...but Oh the indignity !


Well I'm not sure how old you are Bones but if I'm like you now at 54 then I suppose that begs the question - what were you like at my age and have the intervening years...well ...significantly intervened?! In my case I think being a woman with a small frame who carried three extra large babies to full term and beyond has taking its toll on my poor old lumbar vertebrae.

I'm also still thinking a bit about Venus and have decided that she's still pretty young for us to compare ourselves to on any level - and that ageing well or badly with Sjögren's will probably influence her outcome.

I've known several who have put themselves under huge physical and mental pressure when younger and then paid a very high price later in life. Hoping I'm wrong and that money, medications, diet and other factors will cushion her from the blows that Sjögren's is meeting out on me just now!! X


Well if you insist I'm 74 net month ! But I'm going down shouting.

I was still working when I was 54 ( I was a radiographer) and pretty well. When I was 58 I had breast cancer which fair took the wind out of my sails when I was taking the drugs afterwards all my joints seized up and a blood test showed my rheumatoid factor t to be 500. A certain amount of panic ensued and I was diagnosed with Sjogrens (which I had never heard of)

No problems until about five years ago when it all kicked off. Referred to Dr Price and Hydroxychloroquine,Mycophenolate and Amitriptylene followed just about yearly.

And here we are now.

My mother had another AI disease .....Retroperitoneal Fibrosis which is quite

rare ,and was kept going for several years with Steroids which eventually crumbled up her bones.

So that's my story. One husband,two offspring abroad one elderly dog ditto cat

I guess you are a Scot ? Me too. So we can deal with all of this !

1 like

Well I will just say that you've already outlived both my parents and all of my grandparents BB and I'm thinking longevity isn't in my genes. Which is all as well because I don't much fancy a very immobile, painful old age.

Anyway we now have a new party leader who is 74 so you'll can exchange Venus for Vince Cable as role model?!

I could never do any job which involved standing or staying awake and alert for longer than a few hours now. I'm aiming to undertake a PhD but anticipate that i will go for the most part time one and have to rely on the Sjögren's related small vessel disease of my brain not accelerating suddenly!

Awful though how one traumatic event such as breast cancer could trigger all this for you. I think it was the sudden deaths of both my parents that triggered my RA symptoms 7 years ago but I already had severe eczema, alopecia areata and hypothyroidism - all from the year dot - so my expectations of good health weren't ever that high.

I really don't like all the drugs at all though - for me this is the worst aspect of disease and I have to resist the temptation to jack it all in and take my chances.

So having been a radiographer can you tell me whether the various types of inflammatory arthritis other than RA, would show up differently to osteoarthritis in x-ray or CT scan? I mean I know that RA erosion shows quite differently to the damaged cartilage of OA - but does psoriatic arthritis or other types of inflammatory arthritis show up differently in imaging from OA too I wonder? I ask because, although mine has been classed as wear and tear - I notice that my inflammation markers invariably go high when my larger joints, nerves and muscles are most painful - and this seems to include my hips and back. And yet CT last year only highlighted significant wear and tear? Same with MRI of next a few years ago. X



Try and

Which should help.

I have just had the results of my bloods done the other day. I have ro/s and la/s but I wonder if I should be seeing a new Rheumatologist with these results ?

How are your bloods ? I had a RF of 500 last time I was tested but have been told it doesn't mean anything. Apart from one doctor who looked confused and said it meant I would get RA !


Thanks for the links.

Ro and La is Sjögren's specific - high RF can go with all rheumatic diseases equally but is most common to primary Sjögren's and RA.

You clearly have seropositive primary Sjögren's with this autoantibody panel. You could develop RA or others though but Sjögren's is the certainty.

Anti CCP is specific to RA and DSdna is Lupus - can't recall specific MCTD one. Dr Price is tops for Sjögren's in U.K but would refer you on if she couldn't help. If she's too far away you could ask her for someone who specialises in Sjögren's who is nearer to you.

I don't have Sjögren's specific antibodies or RF. I have +ANA 1:320 with pattern more suggestive of Scleroderma (ahh!) but my lip biopsy was 100% positive for Sjögren's (could be primary or secondary though). So far they say my Sjögren's is primary. Hope this helps! X


Thank you. Well Dr P suggested this man but will he think I'm a complete fraud with normal bloods?


I've told you BB - clearly he won't think that - you have seropositive Sjögren's!!


Plus Dr Price is the UK expert - he's hardly going to contradict her!!


Ok. Sorry ! I know I would try the patience of a saint. When you get old you witter... just like my mother did ! Ho Hum .

1 like

Ha ha sorry to allow my youthful impatience to escape BB!! Xx


Ach it's nice feeling relatively young and sharp for once BB 🙏🤷🏼‍♀️🙃😏🌵🌵😊 ps cactus is the only emoji I can find to represent us Moisture Seekers, young and old alike! X


All my bloods have been negative for everything also. Just had blood test for myasthenia gravis so will see if that's negative also. My fibro Dr told me that 30% of Sjogrens are negative & same with MG. My immunologist said you have to look outside the box.


No comment !🤐

1 like

You may also like...