Long term pain in both shoulders/arms & limited movement ?

[painandmorepain]

I have had horrendous pain in both shoulders since xmas. The pain moved onto both arms too about Feb and now both hands too. Movement is very restricted so I cant dress myself, raise my arms, use my hands etc. It may have started with a short term back problem but I dont have history of any real back problems.

Prior to this I was very fit and active (BMI still below 20) despite well controlled RA (on hydroxychloroquine). Working and looking after 4 school age DC.

Surely despite covid it should be possible to have got some diagnosis and not just been fobbed off with morphine patches. Bloods were normal in Feb (apparently though maybe just ESR/CRP). Tried prednisnolone and it had no effect so presumably that rules out PMR.

Any advice? Am planning to go for private MRI and ask for bloods to be redone more thoroughly. Anyone had anything similar or got any other suggestions?

Thank you

I was going to suggest RA, then read you already have it.

Not as well controlled as you think perhaps?

I would speak to your rheumatologist, if you haven't already

Thanks I have had lots of contact with my rheumatologist over the last 6 months though none face to face. He says it will go in a year or two and not connected to RA and not PMR!

I accepted that for a while due to covid and not wanting to visit hospital but cant continue like this as it is unbearable pain even with all the pain relief. Hence planning to go for private MRI but wanted to see if there was anything else I should be considering/trying to get tested/ruled out.

This is nothing like any RA symptoms I have ever had and would presume prednislone would help it if RA too.

Can I ask if you have any change in sensation in your hands? If so what? And are there particular times of the day or activities that make it better or worse?

Ps. Also, what is your work?

My own business from home so luckily have been able to do very little whilst I cant use my hands! I cant identify activities that make it worse although there are plenty that i cant do. It is not like pain goes if i rest so I keep on mainly with essentials for house/home educating 4 kids but leaving everything that can be left and getting kids to reach/open things or help dress/undress me.

I feel it may be worst mornings and evenings but that may be the dread of what I wont be capable of doing during the day and then the dread of going to bed as both arms are unbearable to lie on and I find it so hard to sleep flat on my back. Also that is when most need top up pain killers.

It could be so many things, we can come up with theories, but you need proper investigation. Could be trapped nerve. Rotator cuff injury. Lots of other things. That level of pain, you should get yourself referred asap. Hospitals are being zoned, it should be as safe as anywhere else, so don't let fear stop you.

Based on what you are saying I'm making an educated guess - bear that in mind please. I suspect an MRI will be useless. You may need a nerve conduction test. I don't think it's a trapped nerve as such, but it does sound like an irritated or inflamed nerve. If it is, there are ways to help - look up nerve flossing or glides. You'll find a lot of physio videos on YouTube. The trick to these exercises is little and often, and approach them like a ballet dancer not an athlete - slow and graceful is the easy to go. If you look up medial, radial and ulnar nerves of the arm, you will also find that there are some specific symptoms that you may be able to identify particular nerves causing the problem - although it may also be hard by now to isolate some feelings. Two other things - if you are a side sleeper, try using a pillow or support to stop your shoulder and arm from flopping down. And pain can make you clench your hands in bed - try to keep your hands unclenched if you do. Clenching irritates the nerves more. Some people find that flopping an arm off the side off the bed, palm up, can relieve the pain too.

If I am correct - and it's a guess - pain killers won't help as the problem is the passage of the electrical pulses that travel through your nerves being interrupted by the pressure of the nerve in specific parts of the arm. There's other treatments that might relieve the pain, which are neurological, and surgery is possible in severe cases - but I honestly wouldn't recommend either unless the exercises don't help at all. Assuming I'm correct....

Now I know that steroids have not worked and hence presumably ruled out PMR I am planning to go private immediately. I am not asking anyone to diagnose anything just to suggest things so I ensure I get all necessary tests.

My rheumatologist is obviously not interested so what department should I be asking for? What other bloods? I have looked at possible options just wondered if anyone had anything else I could consider getting ruled out.

I appreciate hospitals are much safer now but I have not been anywhere indoors since March so it will still be a big step and want to ensure it is to most appropriate department.
Thanks

Different hospitals organise in different ways. You want to ask for a nerve conduction test.

Thank you - that certainly sounds worth ruling out as pain killers never ever relieve pain fully. I had private physio at least weekly from xmas to lockdown and continued for a while via zoom but have not done any for a couple of months as it didnt help but it maybe it was the wrong exercises if thinking it was something else. I notice myself clenching my hands in bed and have tried to avoid it. My right arm is worse that the left so i have to sleep facing middle of bed not the side despite having always slept the other way.

What type of consultant would i ask for or is there just a referral for unknown pain?

@painandmorepain you need to see a neurologist and/or a rheumatologist. It sounds very much like Brachial Neuritis.