Frozen shoulder and worsening PA

debram

How do people cope with a frozen shoulder???, I am 6 weeks post shoulder decrompression op and have been told i either have or am in early stages of a frozen shoulder, I cant lift my arm to wash- do my hair- put on a bra or dress so everything awkward. I had the op as both houlders have spurs and bursitis- I was told there was muscle damage too from the spurs. I have PA in my shoulder and my feet but this is all getting worse too. ive booked to pay to see a rheumy private as to wait on NHS taking too long. Pain is constant- I have 3 hrs sleep befor I take4 meds- Ive just been put on slow release higher dosage tranadol instead of the 50mg I was on and will take paracetamol and ibuprofen My GP said I can have morphone too- I was on that after op but didnt feel any benefit- whats morphont like long term? My consultant said he cant give me an injection for fear of infection but I have to keep up physio and ill have one in 6 weeks. My left arm now the dominant one is suffering but Ive been told cant have injection in that either in case it has adverse effect. Im on methotrexate but feel my PA in general is worse- Im so tires I also cant put my feet to floor when I go to loo at night. My thumb and middle fingers feel like someones pulling them with string first thing in the morning. Throughout the day I have pain and cant grip simple things like a mug . I have psoriasis and have suffered with euvitis and iritis- diagnosed with PA in Jan I tht now Im on methotrexate it would slow things down? Im off work since feb as I cant cope- Im having treatement for depression with a phsychologist- My work now say were going formal and Ill either be offered to finish work or they will give notice of termination. My boss had initially hoped early retirement was an option but one of my doctors said everything I have is treatable so he doesnt know when Ill be fit to return to work. Occ health suggest a phased rtn when my note runs out Sep. I wasnt fit before the frozen shoulder so its worse now.Ive now got added stress worrying about being laid off. I have a demanding job and although its not heavy manual work- its customer facing and its physical and you have to be on top form to cope- I have a very stressful job and have also been diagnosed with work related stress, burn out and depression..Ive also just had an MRI as i have inflammatory markers in my blood and as I have ongoing bowel problems my consultant suspects crohns but I wont get those results till 6 Sep.Can PA be the cause of these inflammatory markers?Ive read frozen shoulder can take months? Sorry this is long but id appreciate some replies based on your own personal experiences .

stickywicket

I’m not sure how useful my experiences will be to you, debram.

I certainly can’t help on the work front as it’s far too long since I was in paid employment. I don’t have Crohns, any other bowel problems or depression. I’m pretty sure that Crohns is an auto-immune disease as is PsA so there could be a vague connection there. Mine is RA not PsA but they are very similar.

Rubbish shoulders I’m used to over many, many years - so many years that I was never offered any surgery for them just physio. I can raise both arms in front of me to about level with my shoulders but no higher and I can raise them out sideways about 12”. I exercise daily to keep that movement. Mr SW washes my hair for me, I have a long handled washing aid and a long-handled comb (available from disability shops). I choose clothes carefully – blouses are easiest, sweaters have to be eased onto a stick and carefully manoeuvred over my head.

It sounds as if it’s not just your shoulder though, debram, and that the meds aren’t controlling your PsA properly right now. This can often happen after surgery. It’s a pity you can’t see your usual rheumatologist for continuity. Have you tried ringing your rheumatology helpline?

julie47

Hi debram

Sorry to read that you are having such a terrible time at the moment and I can fully understand about you not being able to raise your arms because of your shoulder problems. I can not raise my arms either and so like sticky I use a long handled brush and my oh washes my hair.

I hope that you don't have to wait for your rheumy app too long and that they can help you.

In the meantime take care
Love and (((((((()))))
Juliepf x

Soretoe2

hello debram, my sympathies with your shoulder problems. I also have excruitiating shoulder pain and am virtually unable to use my left arm/ hand. Mine comes from spinal damage to my cervical vertibraes.
You asked about the morphine.
Morphine is actually one of the safest long term medication to take. I have been through the lot of different type of meds and have settled for transdermal patches and mst OR Tramadol as back up. My reason is mainly due to what to me are unacceptable side effects of Gabapentin/Lyrica/Robaxin/amitriptyline etc;
The problem is getting the dose right, once that has happened it's a very good pain duller.
Perhaps you could ask your gp to try the patches, they will start you on low dose but you can titrate up until you reach a dose that suits you.
I have opted for a lower dose patch with the back up meds as and when I need them.Some people prefer a higher dose patch with no back up. Even paracetamol can be used as back up meds as it enhances the morphine/ derivative.
I have had a lot of operations over the years and learnt that the more the pain is under control the quicker the recovery, as the body is more relaxed and able to work on mending rather than being all tensed up while in great pain.
Hopefully as you recover your shoulder will settle down and you will be able to review your meds down as well. While it is so bad you really need a gp/hospital visit to discuss pain control.
Good luck, hope you feel much better soon.

debram

A belated reply as Ive not visited the site since I posted! I went back to my GP and he changed my Tramadol to 50 mg tramadol- 2 tablets 4 times a day- pains more manageable as Im now only on paracetamol during the early hours of the morning. I went back to my rheumi as the pain was unbearable in my feet hand hip and shoulders. I had more x rays and get the results tommorrow. In the meantime he put up my Methotrexate to 8 tablets a week and introduced me to sulfasalazine- gradually inc the sulfaus to 4 a week- he hopes that this will work- were giving it 3 months and if not will change all my drugs. He wrote to my dermatologist as he said the dermi could issue a different drug if Ive failed Methotrex (which I have as I still have active psoriasis and PA) but the guidelines for the rumi is that I must fail 2 drugs- hence the introduction of sulfasalazine. The NHS have these guidelines as the cost of the drug they want to put me on is aprox 10k PA. I am told this other drug (dont know the name) doesnt cause internal damage either like methotrex- I feel dissapointed cant get something that will help because of the cost but ill see what happens now. Lately ive been having involuntary muscle spasms when at rest and this is now worrying me- jerking in my legs arms and even my neck-I asked my GP if my being recently put on citalopram for depression and bowel probs is the cause but he said no. Ive been doing research and the site I visited says tramadol can interact with citalopram and cause muscle spasms so ill have to mention that to my reheumi tommorrw! My shoulders still frozen and Im still fatigued. Ive been sent to an independant doctor by my employers occupational health and was told during the interview that he felt I wasnt fit to work now or in the future as the conditions I have are degenerative and asked if I could early retire on ill health. Something I would be keen to do. ( I have other medical issues) he then sent the report back to Oc health. I had a copy of their report and oc health said I couldnt work in an office environment but he wasnt satisfied I should give up working completely.He also said as I was only diagnosed with PA in Jan I hadnt had long enough treatment- Ive had Psoriasis 2 yrs and my PA went undetected until they discovered the spurs and bursitis- also my rheumi told me theres already damage and I cant get that back but now its all about preventing further damage. I was suprised with this response so sent under the Data protection act for a copy of the gp report who interviewed me- imagine how I felt when I read that his report said he didnt think I should be working and early retirement could be best option! My oc health put me through the stress of seeing an independent GP then totally ignored what he recommended-thats the second time this company have done it as back in May another oc health company also recommended I look at early retirement-my employer used a different company until June and then they handed over my case to this new company. I have struggled working for at least 4 years and would like nothing better than to be fit to work but im not- -I was working 60 hrs a week and being paid for 35- I was a top manager who worked hard to get where I was but its come at the cost of my health. I feel destroyed and let down. I cant use computer for long spells- ive typed this with 4 rests! My IBS means I have frequent visits to loo (or accidents) and my PA hurts! Im being treated for depression and anxiety I know I cant cope so for me retirement would take away the stress that my doctors tell me aggrivates my psoriasis, PA and my IBS. The company now have the option to dismiss me as I am not deemed fit to work for them- this will cause me financial problems so Im seeking a solicitors advice and hope to appeal. 20 years working for them amounts to nothing.Ive just found out my husband has a serious heart condition that will require an immediate operation- he mustnt have any stress in the meantime so Im trying not to share how I feel with him- Thank god I got my phsychologist!

Soretoe2

Hi Debram, thank you for updating your increasingly difficult position.
I'm sure I won't be alone in offering you my sincere sympathy.
I had a similar work experience some years ago and all my loyalty while I was working through pain and disability, working twice as hard as a more 'normal' person and going in no matter how I felt, while other colleagues were always' off sick' on principle for a couple of days now and again, came to nothing in the end. The company I worked for was too small to actually do anything about and I lost my job literally overnight, after 26 years of working more hours than I was paid and doing anything including the bosses' private stuff just because I felt I had to prove I was as good as everyone else. What a mug I was.
All you can do is plug away at it all.
Stress is a big factor in any illness. I also have psoriasis and it was much worse during my job loss and financial instability.
It's good to hear though that you're happier with your pain medication these days but sad about all the cost issues surrounding the arthritis drugs a very common occurrance these days I'm afraid.
Good luck when you see the rheumy next and lean on your psycologist, it's what they're there for!
See the solicitor and see if there's anything you can do to get your employer to play ball. You must be so fed up with it all.
Take good care of yourself and your husband, keep your chin up and let us know how it's going for you. The people on here are so supportive when you need a shoulder to lean on. Joy

debram

Thank you Joy- Its nice to hear from someone who understands- Im sorry for what youve been through. Its nice to know that there are others who can "listen" and share their experiences- sometimes I feel so alone. Im using this forum like a sounding block!
I understand when you say you worked twice as hard as anyone because thats what we have to do! I also had encephalitis and meningitis many years ago - it was so severe I wasnt expected to come out " normall" but I did- just had short term memory since- that meant I had to write everything down so I did work twice as hard- if I went on a course I had to study my notes over and over until I got things right! I was even a trainer and practiced the courses I wrote and delivered on my long suffering husband many times- now Im battling the PA! I too see people around me taking the micky with a day off here and there and yes that too makes me angry- My sick record up until 5 yrs ago was excellent- with a first op that didnt work things went downhill and I know the pressure Ive been under in work led to my psoriasis ans stress-It affects your home life too because givin everything to work left nothing for myself and my family- I hardly saw them the last few years- I came home had tea and went to bed- getting up before my hubby-up at 530 starting at 7 am and home at 8 with a hour drive each way. In fact both the immunologist I see and my Phsychologist says its work. Stress- unfortunately I know im not alone as is not taken serious enough by lots of employers! I just live in hope that I can appeal against oc health- I just know I can not do a job- even part time- its all I can do (as it has been for the last 3 yrs) to get through the day!

lizzy100

steroid injections are very good for frozen shoulders. and later in the thawing phase physio.

dreamdaisy

Hello debram, it's nice to hear from you again and I am so sorry that things are not improving that much for you. I reckon the new med you mentioned is an anti TNF, they are expensive and as such are not readily dished out to all and sundry. I too have psoriatic arthritis (but not too much of the skin trouble) and I am currently on injected humira, injected meth and sulph for that, plus pain dullers and diclofenac for my OA, BP tablets and citalopram for other stuff.

It is so frustrating when one gives a great deal of your time and yourself to your work only to find out that your employers regard you as being totally dispensible. I hope you are able to get early retirement on medical grounds as all this extra stress is not good for your skin or the arthritis - let alone your other conditions. I hope your rheumatologist is able to offer some thoughts and ideas about your current treatments and, hopefully, can do something about your shoulder. I know frozen shoulders can sort themselves out in due course but waiting for that to happen ain't fun. If he is now able to offer you a steroid injection then may well be an option but if the risk of infection is still too high then that could be another closed avenue. It ain't fair, is it? I wish you well and I hope you visit us again sooner rather than later! Take care. DD

kentishlady

Hi debram. You hve my most sincere sympathies. I have been suffering with a frozen shoulder for almost a year, in addition to OA in my back, and know exactly how you r feeling. The only good thing is that it does eventually go tho mine has certainly taken its time! I had a fall 2 days ago which hasnt helped my back or shoulder and have badly hurt my wrist so am typing this left-handed. Take care. Beryl

stickywicket

I'm sorry things are still so rough for you, debram, and I echo all that the others have said. You do need somewhere to let off steam, especially in view of your husband's health problems so please do so here whenever it will help. (P.S. Could I be a bit cheeky and ask if you could break future posts up into paragraphs as I find a solid block of text very difficult to read :oops: Thanks in advance )

debram

Thanks for all replies- I am now booked in to see a gp about morphine patches so its good to know that they are considered safe long term.

I am also trying to see another consultant for a second opinion on my shoulders- my consultant didn't give me a cortisteroid (or something like that) injection. I need it badly though as my left shoulder is definately gone now and I spent Friday crying in bed with a hot water bottle on the back of each shoulder! My poor hubby didn't know if he was coming or going- I think I'll invest in a bell......

I will also visit a disability shop to see what gadgets I can buy to help so thanks for telling me what helps you.

Finally, I promise to make sure I break up my posts to paragraphs!
Reading back over my posts I seem to have forgotten basic English, punctuations etc- typed as I thought it I'm afraid

stickywicket

I hope the morphine patches (if prescribed) help. You clearly need something if you spent Friday feeling so rough. Shoulders can be difficult to treat even with corticosteroids as, as I remember from long ago, there are two places that they can inject, if they get the wrong one it won't help but it can be tricky to determine which is the right one. With luck, things will have moved on a bit by now.

You can get a good idea of gadgets available by looking online but a proper shop will usually take stuff out of the packet to let you have a try. I hope you find some things that help.

Oh and thanks for the paragraphs :P I was worried I might offend you by asking and I'm grateful you took it in the spirit in which it was intended. This was so much easier to read

salamander

Hi there, I know exactly how much pain you are in with your shoulder as had a frozen shoulder myself. After one steroid injection, which didn't do anything as it was 'only exploratory' I found out after, I eventually had a steroid injection under ultrasound. It did the trick but I had 4 months of increasing pain and lack of movement. I couldn't even put deodorant on, never mind get dressed properly. I hardly slept towards the end, maybe 15 mins at a time because everytime I moved the pain woke me.

I see you can't have an injection just yet but please, please do what I didn't and phone the occupational therapist department and get them to come out to do an emergency assessment. They can give you quite a few aids which will help you until you can have some treatment.

Also, push to have your steroid injection under ultrasound as they can see exactly where the inflammation is and target it.
best of luck.