Stiff Shoulder Anybody?

rayray

Hi Again,

I am looking for a little bit of information about having a stiff shoulder. I have had problems with my shoulder for several years and had surgery on it last October. I have no osteo-arthritis and the issues were around the joint rather than in it.
My shoulder keeps stiffening up drastically but then improves. Initially my consultant said this couldn't be frozen as it would stay frozen. When I have seen him in the last few months though it has been very stiff by chance on the days I have seen him as it keeps flaring back up, so he thinks it is frozen and has offered surgery to release it.
For the last two weeks I have had almost full movement in it and it has been practically pain free. The last few days it has stiffened up so I have little movement in it and the whole area is very sore. I am reluctant to have capsular release surgery as it does free up from time to time on its own and so I feel can't be truly frozen.
I also have a degenerated disc in my neck and wonder if this is playing a big part in this.

Does anyone else experience this with any of the inflammatory types of arthritis?

Thanks so much.

stickywicket

This sounds a bit unusual. I have very little movement in my shoulders but that's due to my RA / OA. My understanding of frozen shoulder is that it does sort itself out in time. You seem to be in neither of these camps. I hope it can be sorted.

Slosh

I had surgery in February to remove two prolapsed discs in my lower neck and to try and remove some of the OA there. Although my shoulders aren't frozen they are vety painful as there is pressure on my spinal nerves and there are times when I have limited movement and can find dressing difficult. I also have a loss of movement in my left shoulder due to muscle weakness. My GP did examine my shoulders to see if there were any signs of OA in them but felt the problems were linked to my neck . I had an MRI on my neck which showed the problem. Don't know if this is of any help.

rayray

Thanks Stickywicket and Slosh, I really appreciate you taking the time to reply. I feel thoroughly miserable today - I have had two good weeks and now feel back to square one. Have seen a neck surgeon (two years ago) and shoulder surgeon and found issues in the shoulder and neck although they both thought that the shoulder was causing most of the pain. Today I feel that the stiffness in my neck has triggered shoulder pain but there is little I can do apart from take pain killers and try to keep moving.

I feel a bit isolated with all this. Having seen so many surgeons over recent years about various joint problems I feel I have reached the end of that road and I need to manage but facing the restrictions this places on my life I find very difficult to come to terms with. I know many of you have and I wish I could mentally switch over from looking for a solution to accepting my limitations.

Sorry to sound so negative - bad day!

stickywicket

Oh rayray, I'm so sorry. We all have these days and where better to come than on here where folks do understand?

I think your solution of taking the dullers and trying to keep moving it (gently) is a good one but have you thought of enlisting the help of a physio? I've had some really good advice from them over the years.

Facing the restrictions imposed by arthritis is never easy and there's no one-size-fits-all. We each have to discover our own paths. Bu t at least, on here, we can compare routes as we do it

Slosh

Can't add much to what Sticky has to say really. I've had a good day, been out with a friend, but feel shattered now and as I found going on escalators while using two crutches challenging/scary I'm not sure how long before I will feel confident to that alone which limits my use of tubes to visit places. But over the last couple of weeks I've been going through a challenging time when I felt really down and frustrated. I'm quite new to all this and other than dealing with the pain it is the limitations and difficulties in everyday life that often prove the greatest challenges. One of the things I struggle with is not pushing myself too much thinking that will help and accepting that sometimes less is more. My feeling is that there will be good and bad times, we need to celebrate the good, share the bad (where this forum is a Godsend), and try to find different ways of doing things where we can.
Yes today has been a good one, but who knows what tomorrow will be like?

A physio referral could be useful, not just for the exercises but for the advice. Have you thought about massage? The sports type? I had deep/soft tissue massage as part of my post op physio and though painful it did help and I have found a local sports masseuse who I want to see to continue with this.

It might also be worth talking to your GP about your pain relief as it can take a while to find something that suits you.

In the meantime don't forget we are here, we can empathise with how you are feeling, and remember you don't have to do this on your own.

emsjane

Hi,

You have the exact same problem as me. I've been diagnosed with Seronegitive Inflammatory Arthritis and I had and X-ray on my neck which showed arthritis in the lower part. I've had pain across my shoulders for about a year now. The rheumatologist is sending me for an ultrasound scan soon and she said the arthritis causes tendons to become inflamed and stiff and that I could have an ultrasound guided injection of steroids to try and relieve the pain and stiffness.

I also get pins and needles in my hands, especially in the left which is my worse shoulder and she said the nerves in my neck my the arthritis could be causing this.

I hope this helps.

rayray

Thanks again for your replies, it is so difficult when there is loads of stuff going on and it isn't clear what the cause is.

The shoulder is worse again today but I am having a day off work and not sitting at a desk helps a lot. To be honest I don't know what to do or whether to do anything. I saw my GP two months ago and mentioned that it doesn't seem to be a classic frozen shoulder, she did a blood test for inflammatory issues (which was clear) but said that I had to discuss it with my Consultant - she wasn't happy to refer her myself. To be honest she listened but looked at me as if I was kind of nuts! My shoulder Consultant is very nice but is only focused on my shoulder from a surgical point of view - I can't blame him as this is his job after all. I really would like a Rheumatologist to look again. I have seen one just once and she very much went down the route of AS but the MRI said otherwise and that was that. Should I ask to go back - I don't know?

Have paid £££ for physio over the years due to multiple surgeries and I found them fantastic but I kind of know what they will recommend and I'm doing what I can.

Thanks again for all your replies - your care and concern has really perked me up.

pot80

Yes I have,an excruciating pain in my right shoulder that occurred intermittently over the years starting when I was 56 (24yrs ago now). The GP never got to the bottom of it and once I ended up in hosp. where the surgeon asked me if I used to play alot of racket sports. I said yes and he answered that is your problem and sent me off for an MRI scan which he said showed that I had a genetic thinness of cartilage in the joint. The next big flare up and a different GP wanted to inject the joint. My wife would not let him and said that it was contra indicated and asked him to read the notes from the MRI scan. He finally agreed an injection was not a good idea.After each flare up I was left with a frozen shoulder so my wife (a physio) got me to arrange a pulley screwed into a beam in a conservatory area attached to the house and thus with a thin rope attached I could gently raise my right shoulder by pulling on the cord with my left arm. After several days I manged to get movement back into my shoulder. I went down with a polymyalgic onset to seronegative RA four years ago. And from what I experienced then I am convinced that my original shoulder problem had an RA connection

emsjane

Hi,

My blood tests don't show inflammation either! That's why I've been diagnosed with Seronegitive Arthritis. But I have arthritis in do many joints now.

You definitely need to push your doc to refer you to a rheumatologist. And when you get there, don't let them sign you off.

Did your MRI show inflammation in your shoulder? If so you could have a steroid injection, see if that helps.

Good luck!

stickywicket

I wouldn't know what to do either :? Your orthopaedic consultant is only really there to deal with surgical stuff and I'd guess, is no more likely to want to refer you to a rheumatologist than your GP.

I guess it might be that there is still healing to be done and your job (If you feel better when not sitting at a desk) might be getting in the way of it.

Pot80's suggestion of the pulley is one that helped me years ago when my shoulders were just starting to kick in. My husband screwed a big hook into the lintel above a door.

rayray

Hi All,

Thank you so much for taking the time to reply. I am still unsure what to do as I find the GP tends to want to prescribe something or asks me to contact my shoulder surgeon which is a bit frustrating as he just wants to look at my shoulder - unsurprisingly!
Have been having an awful week and have been so stroppy because of intense pain - poor hubby! My neck has been really bad with awful pain down my back and arm. My arm has seized up even more and trying to sit and work at a desk has been almost impossible this week. I tried again yesterday but it just all got too much.
Anyway today I decided to contact a spinal surgeon who I saw two years ago who suggested then that I see him once my shoulder had been operated on. I'm not sure what he will suggest but the key for me is understanding my ability to work at a desk in the future. I seem able to manage if I am standing and can support or not use my left arm but using a pc at the desk is very difficult - so I am using an arm chair at the moment with my arm on a cushion.
I got very down in the dumps yesterday feeling I was on the scrap heap as I am finding desk work so difficult, and have done for several years now. I have loads of hobbies but they are difficult at the moment. The last few days have been so painful and I haven't known what to do with myself. Feel better today as I have had a day away from the desk but need to get back to it tomorrow. Really not sure how I am going to manage in the future but then that is why I am trying to get some advice.
Sorry to ramble. x

stickywicket

You're not rambling, rayray but you are clearly in a lot of pain right now and I think it's a good plan to see the spinal surgeon. The GP can't really do any more than 'prescribe something' or refer you to a specialist hough it's possible that the shoulder surgeon could have done something. (I was once referred to a foot surgeon as I could barely walk for pain in my foot. He did a throrough job with the x-rays and showed me that my foot was fine but my old TKR above it was in bits :roll: )

Quite a few offices are now providing 'standing desks' as it has been shown that they're better, physically, for people. Have you consulted an Occupational Therapist at work to see what can be provided for you. Several people on here have benefitted from various bits of equipment.

Hobbies are good because they provide a useful distraction from pain but they have to be ones that don't add to it.

I hope today goes better than you feared. Please don't ever be afraid to come on here and just tell it like it is. Even if we can't help we can empathise

rayray

Thanks Stickywicket, you really are helpful.

Just heard back from spine consultant's secretary. He no longer takes NHS referrals at the hospital I saw him so now need to start the whole referral process again. Maybe I will see if they have someone locally. The guy I saw before did cervical disc replacements whereas I was told this wasn't available locally which would mean a much bigger op. Anyway it was a couple of years ago so I shall see if they are using newer techniques or at least micro surgery here if that is the way I am advised to go.
Can I face a 7th op? Not sure but my options seem limited at the moment.

Have a great weekend everyone.

Slosh

Hi
In terms of getting extra help with equipment at work the route I went through was Occupational health, I've had a few appointments with them now and all were very helpful, and possibly Access to work, this was reccomended for me at my last OH review, and once it was agreed that I met their criteria, they came to school, assessed me and made reccomendations. Only delay now is getting things ordered. I haven't got a rise and fall standing desk as it wasn't appropriate for me as I have mobility diffculites but I am waiting for delivery of a height adjustable desk. In the meantime to help bring my desk up to a better height for me I got our caretaker to put it on some pieces of wood.
As for surgery I had surgery earlier this year to remove two damaged discs from my neck and fuse the lower three vertebrae where the discs had been removed. However it is a complex operation with "variable outcomes" and as I was told by an unsympathetic registrar at a post op review "The aim of the operation was to stop you getting worse not to make you better". I'm not saying this to put you off but because my impression was that they try other treatments and management first such as pain relief injections and physio.

rayray

Thanks Slosh,

I run my own business with my Hubby so anything we do is up to us. I do have the option of working at home in an arm chair but even this is limited by pain. Pain killers which kill the pain also deaden my brain so aren't a great solution. Standing to work may be an option though which I will look in to.
Have talked to Hubby after very little sleep again and I will email my shoulder consultant and ask whether he can refer me to both a spine surgeon and rheumatologist as this is the way my GP wants to do things. If he says the GP has to do it then at least I can show the GP this and get them to do it.
Will OT's come out to my home if I just ring and ask? I'm just wondering if they can offer any other solutions to making normal living a bit easier.
Thanks again for your replies.

stickywicket

I quite agree about the pain relief. Rather than removing the pain they simply remove us from it and, although vital at times, are not a regular 'solution' for many of us.

I know that Occupational Therapists will come to one's home to assess for things needed there eg hand rails, raised loo seat etc and to get them one just looks at the local government pages on adult social care and rings up. I really don't know if these people will also assess a working environment though I see no reason why not. (Slosh might know. She's much better at working matters )

Slosh

Don't know about that Sticky!
You may be eligible for Access to work but I don't know the details of how it works in relation to the self employed. If you phone Job Centre plus they will give you the contact details. When you phone you will be asked a number of questions and they will decide if you qualify for the scheme.
In terms of OT I recently found out that you can refer yourself directly to your local OT service, the details should be on your local council website but there may be a waiting list so I don't know how long before you get assessed. Reminds me, I must fill in my form!

rayray

Thanks again - all great info!

I have just found online and ordered an adjustable laptop stand. It can be used to make a standing desk, angled on a lap (and stops hot leg syndrome!), on a bed and also accepts a tablet or book. I am quite excited about it to be honest. If I can back to work pain free or at least minimised that will be great. It was surprisingly inexpensive for the benefit it will give me. I wouldn't have thought of this as a solution if it wasn't for your help so I am really grateful.

I will look into anything else which can help. Thanks so much.

rayray

Two bits of positive news:

1) My shoulder surgeon has referred me directly to the spinal consultant which is a great result. He hasn't referred me to the Rheumatologist as my blood test in June showed no signs of inflammation. I guess if it is auto immune I need more visible signs to show themselves. Hopefully I can get some advice from the spinal surgeon.

2) My laptop stand arrived so I can now work standing and looking up which has made such a difference already.

So feeling much more positive now I have a way forward.

stickywicket

That sounds good on both counts, rayray. I hope they both help. Thanks for the update

Slosh

Good news.