Can anyone advise with these symptons - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

10,834 members5,407 posts

Can anyone advise with these symptons

Fuchia profile image
10 Replies

Hello people. Can anyone give any help at all here??? Diagnosed last year with L S, Shogrens, Fibromyalgia, Osteoarthritis. I do have many discs in my cervical spine that are ruptured and herniated. With limited movement of neck. A couple of weeks ago my neck has gone to another degree. So painful and jaw and neck ache. Pains and tingling down arm and thumb and finger. My lower back is very painful with pains down leg and feet. With some tingling. Feel quite lifeless in general. I am on Losartan, Gabapentine, Ompromazol and othe supplements and pastels. Getting me down now. Any suggestions!!! Didn't want to bother GP as she will probably say 'it will pass.' I think may be an MRI of cervical and lumbar spine, but don't know! Thanks a lot fellow sufferers.

Written by
Fuchia profile image
Fuchia
To view profiles and participate in discussions please or .
Read more about...
10 Replies

It might be worth asking to see a physiotherapist who may be able to suggest appropriate exercises for you. Maybe look for some videos you like which help you to relax.

But take it gently anyway.

I have primary Sjögren's and Hypothyroid plus secondary Raynauds and was previously misdiagnosed with RA. I have had imaging done of brain, neck, lumbar spine and neck.

I have small vessel disease of brain, subclinical atherosclerosis, cervical Spondylitis, significant wear and tear (OA) in lower spins and hips.

It's all classed as osteoarthritis but I'm suspicious that it's actually inflammatory arthritis because my inflammation markers rise when the pain flares in these areas. I'm on 3g of Mycophenolate daily for my Sjögren's but it doesn't seem to be helping my pain much so far (9 months - still flaring on and off).

I think you should insist on some imaging - x-rays or MRI or CT with contrast for clarification bearing in mind that you have LS and Sjögren's as well as OA. I wouldn't trust a diagnosis of Fibromyalgia without having some imaging done first.

Fuchia profile image
Fuchia in reply to

Hi Twitchytoes. I have Reynauds as well. I have an appointment Tuesday week with GP and will press for a scan of some sort. Cervical spine has definitely deteriorated recently. I know you write on here frequently and you are very informative, thank you for that. I eat so healthily and exercise and do yoga, pilates, acupuncture, massage, tau-chi. Does make you wonder is it worth it!!! Do hope life is treating you well at the moment.

Fuchia profile image
Fuchia in reply to

Wanted to ask you what sort of pain you suffer with the Sjogrens?

Thanks a lot

in reply to Fuchia

I suffer from neuropathic pain and pain in all my tendons I think - only it's my small nerve fibres that are affected so it doesn't show up in the usual nerve conduction studies. So it mostly doesn't relate to the arthritis my neuro has rheum have explained. These are just coincidental - Sjögren's is known for causing symptoms relating to the nervous system - it's part of the systemic inflammation everywhere. I was originally misdiagnosed for 4 years with RA so I suppose that's how my pain manifested for a few years but then it became like a fire everywhere - flares are most severe when I'm still. Hope this explains

Fuchia profile image
Fuchia in reply to

I had nerve conduction test too. Mine ....... niypthing showed up either. My neuro said I had neuropathic pain. My nervous system is totally up the wall. The Gabapentine helps to a degree. I've had nerve root injections in cervical spine..... don't really know if it has made a great deal of difference. Thanks for all your h Leo and the info. Much appreciated.

bengali profile image
bengali

Tingling or numbness in general (from what we've been told by docs and local physio) generally mean nerve impingement, whether it by from the discs itself, narrowing of the column, spurs, injury, or etc.

It very well may pay to ask, press a bit, for an MRI if you are experiencing these symptoms as it may (key word, but still) be something that can be fixed, or at least stopped from getting worse.

If it's lasted more than a few weeks, I would not wait further, if they can't give you answers as yo what is happening now, you really should get referred to see a specialist.

I wish you all the best.

Fuchia profile image
Fuchia in reply to bengali

Hi Bengali, thank you for that. I am under a very good rheumatologist. Who has diagnosed very quickly. I see the GP Tuesday week and will push for an MRI as I am sure spine has deteriorated. All the best to you too.

Thelma profile image
Thelma

I agree, seek a MRI, then check out a Specialist, maybe you can located another foundation that specializes for questions regarding bone/muscle problems, and inquire with them on what may have been found via the MRI. I would also incorporate relaxation techniques; Yoga, Light Stretching, Gentle Massages, Acupuncture and to seek the advice of an top-rated Nutritional/Health Food store. Wishing you the best and praying for you comfort and healing along the way.

Fuchia profile image
Fuchia in reply to Thelma

Hi Thelma, thank you for that. I actually do all that you mentioned and Pilates as well. Also walk a lot too. Does make wonder is it worth it some times. I have seen a dietitian too. I have an appointment with GP Tuesday week and will push for another MRI of lumbar and cervical spine. I know I am not alone when I say I get frustrated. I know you must work through it, but does it do any good..... I really don't know! Good health to you for the future.

You may also like...

Can anyone advise me re insurance travel?

Can anybody advise me on this issue please.

been quite violent. They started 4 hours after an MRI scan. I see a consultant about an over active...

Can anyone help me please?

and shortness of breath, I now have aches in my neck, above right breast and posterior right rib...

Can anyone recommend a mobile phone with a touchscreen that actually works if you have Raynaud's?

due to heat from your fingertips so assume it's down to Raynaud's. Has anyone found a mobile that...

Please can someone help or advise me in what to do. As my condition is getting worse. An am scared of the worst...!!!

my whole body to swell, my including my head and neck, but every time I have water tablets or...