About the PAIN - does it seem to change everyday?

Bones, joints and muscles
1

Starting a new post cos I am really finding this hard to deal with. I'm starting to think it cant 'just' be FS...it is just too painful, and getting worse every day, but the pain is never the same. Can anyone identify with this?

I have FS in both shoulders. Left is worse and started with mild arm pain in June, then a typical progression - pain, stiffness and lack of mobility in shoulder but I was able to cope with it. Just.

I am now in mostly constant severe pain with 'stoons' or stabbing pains in the oddest of places up and down my arm and neck. But - my shoulders themselves only hurt (the 'take breath away' kind of pain) if I bump something or move suddenly, and I get that sudden catching sensation that throbs for a moment then dies down. Both shoulders still hurt like hell at night, and on wakingbut then I don't really feel the pain there for the rest of the day . However I get the oddest pains in my arms and back - in the deltoid muscle, my bicep, the long bones of my arms and my wrist and in the back of my neck. I call it 'stoon's of pain, where it come in sharp waves, like stabbing. I also have terrible crunching and popping in my joints and neck.

Strangely- some days I have little to no pain, the next day I feel it in a different place, or it just feelsdifferent somehow - like it is moving..? Then it is back to agony hell again. Going to the doc today to get something to help me sleep - I really cant stand this anymore....sad

2

Hi Lesley, we've spoken before and I just wanted to offer you my sympathy.

It's a nasty thing to have to live with. I'm sitting here with my left shoulder/neck/arm absolutely screaming at me feeling much like you have descibed. I know what mine is as I've got five different things wrong with my cervical spine. The problem is knowing what it is and treating it are two very different animals.

I can't remember if I've asked this before but have you had an MRI scan at all? You could very well have cervical spondylosis or one of the other nasty cervical conditions that plague us humans.

Cervical (neck) conditions can refer the pain down nerve pathways to hands/wrists/fingers. You may also have the begining of arthritis in your upper spine or possilbly an irritated nerve root or a worn disc or two leading to compression (absolute agony).

I feel you really need to get to the gp and ask for, even demand further tests/examinations. You need to see an orthopaedic consultant specialising in spines. Get some x rays and scans done and then hopefully some treatment or even surgery.

Also you need better pain control. No one should be left in so much pain without the appropriate medication to help.

Hopefully your visit to the gp today has helped with the pain but you need more than that, you need investigations and a better diagnosis.

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Thanks for your detailed and informative advice. I have never had problems with my neck as far as I am aware.

GP did not even blink yesterday when I told her of my random shooting pains - told me it was to be expected with FS, and apparently crepitus / crunching in my neck is also 'normal' I don't think so, mine is so loud in my neck others can hear it and it sounds like boots walking on gravel! I just got more co codamol and diclofenac for the pain. I will wait a week and go back and ask for an MRI/ referral to an ortho. Maybe I will take my father in laws advice and complain about numb fingers or something ;p .... he has back problems, and apparently that usually gets their attention! Sorry to be flippant but don't know what else do do. I even went in yesterday with no make up and stringy hair (totally goes against the grain) because I fell if I look well, they don't take m e seriously. What a way to have to think before a visit to the GP.

Thank again

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Hi Lesley, old story I'm afraid. Gp's taking the course of least resistant. They are only human and like the rest of us have different personalities and good and bad days.

As you have had this problem for such a long time I really don't see the problem in you having further tests.

Yes necks do make the odd cracking sound but if that odd sound becomes regular it needs investigating.You have enough difficult and frankly at times disabling symptoms to warrent a more thorough check over.

Your father-in-law is absolutely right, any kind of numbness/pins and needles on a regular or permanant basis does usually get you reffered to a specialist. This is because it usually means some kind of nerve problem and can become a serious or chronic over time. I speak from real experience.

Sadly even if you are diagnosed as having cervical spinal problems the true facts are that help is limited.The medications can take your brain away, the surgeries tend to be only for the very serious and can actually make you worse. We all tend to settle for a medication regime that is far from ideal and learn to live with our pain and limitations.

My daughter-in-law has also developed shoulder problems, since she had her children. The carrying of heavy babies etc; have given her awful pain and weakness in her neck, shoulders and wrists over the last three years. She was also a very serious swimmer for about 15 years. I believe that this has also led to her problem now that she is nearly 40.

After three years of anti-inflammatories and co-codamol, she has insisted that her gp refer her to a specialist and finally got the process started. Her gp actually said she was probably right... after three years of asking nicely.

Have a look at some of the spinal forums, Spine Health is one, Well Being another. There is also The Pain Support forum that is worth a look at. If you do a little research you will be able to see if other people that have been diagnosed with spinal probelms fit your symptoms. Education is everything. There are other posts on her about Spinal Stenosis/Spodylosis and similar, have a look at them.

It could also turn out to be Fibromyalgia, again have a peek at a forum and see what you think.

I also think you don't need to go with stringy hair... even though I understand why you did that. You need to write it all down as it is when you have a very bad day, how it affects you, what activity starts off a bad few hours/days.. The docs can usually tell if you are in pain in front of them, they know what to look for. Posture, that pain filled look in your eye for instance. Do not carry a heavy bag in with you.

A pain doctor from a Pain Clinic will recognise immediately what you are saying, you could ask to be referred to one. They are to be honest a bit of a washout but do diagnose and offer some services.

Hope you can get to the bottom of this before it becomes a chronic problem.

You have to be pro-active as no one will knock on your door and help you. Best wishes, Fanny Jane.

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Thank you again for your reply.

I am actually in Tenerife at the moment, and the strangest thing has happened. I was seriously thinking about cancelling the holidays, and I have been in so much pain and the thought of a strange bed, long flight etc ...but we booked it ages ago, and I finally figured maybe the heat would help and might as well be in pain in sunny Tenerife instead of rainy cold Aberdeen.

Now, This probably shows how often my husband actually looks at me...but when I was wearing a strappy top yesterday my husband suddenly told me that my back looks really deformed compared to how it used to look. I had a look in with two mirrors, , and I have what looks like a hump on my bad shoulder side...was not there before!, I have a small rounded hump over my lower neck area, and my shoulder blade is sticking out in a very odd position. I am loathe to go to the doctor here...dont see what good it would do except cost me a fortune. I am still in the same amount of pain, still limited movement in arm. thought it was just frozen shoulder, but this looks awful, i dont know if it is actually the muscles which are swollen, or the bones making such a weird shape. i am still in pain at night and when lying down which eases during the day but really feel pain in my neck and scapula now which I didn't before. I know you have a lot of knowledge of cervical problems fanny Jane....any thoughts??

Thanks ..and sorry for any weird spelling, this iPad has a mind of its own!

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Hi Lesley. just seen your post. I have had my brother here today...rather have been in Tenerife, you lucky girl.

It's strange how a holiday or something different to our usual routine can pick up odd things we don't notice in everyday life. You must be very worried about the difference you have noted. I couldn't possibly diagnose exactly what it is but if you are heading home in a week or two I would imagine waiting to see a doc then would be OK.

There are lots of things it could be. As you've had the frozen shoulder problem for a long time now it could be a bit of shoulder separation or just plain old inflammation of the area due to the chronic nature of the problem you've had so long. Or some kind of spinal problem, of which there are quite few candidates.

I would definitely get it looked at when you return home, you should be sent to see a consultant for an x ray or scan. At least you will be another step forward to sorting all this out and maybe get a diagnosis and treatment that will improve your pain at the same time.

If you have the correct health Insurance, read the very small print first, you could go along to the A&E with excruiciating pain. They would very probably do a scan for you and you'd get an instant diagnosis, which would start the process now. However you'd have to be sure your insurance covers this as it would cost a fortune if you are not covered for an existing condition. In which you'd have to wait till you get back anyway.

I hope you took some decent pain medication with you. I'm not sure what Tenerife allows.

I know you had a bit of a brush off last time you saw the doc but having such a visible symptom should galvanise even the most lethargic doctor. You need to insist if you meet resistance, perhaps take your husband or a friend along for moral support.

So sorry that this has marred your holiday. Try not to worry too much, enjoy that lovely sunshine and have a good break and time off with your husband.

Many good wishes to you from a miserable, rainy and cold UK, Fanny Jane.

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Thank you fanny Jane, for your lovely helpful reply as always. Unbelievably, my pain has reduced dramatically for the first time in months. Had a great nights sleep last night - my hump and me - lol, and did not need to take pain mess today. Did ten lengths in the cool pool yesterday, very slowly, and used a small towel to apply moist heat in the sun to my shoulder for the rest of the afternoon. Feel fantastic today...maybe stay forever!, will take your advice and check our insurance, I might just go and have this bulging scapula looked at while I am here if insurance covers it. Husband is quite switched on in that dept so maybe will be covered.

Thank you for your concern and help xxxx

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Whoops, sorry for multiples, this Internet connection is a bit temperamental!

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Hi Lesley, have done the multiple thing here a few times too!

The warmth is obviously helping you to feel better and more relaxed. I'm not surprised as most spinal and associated conditions are helped by warmth, baths, heat pads and lovely Tenerife sun!

I'll be interested to hear how you get on, whatever you decide to do.

In the meantime lay back and soak up that natural warmth while I go out to our cold, wet garden and give my hubby some encouragement while he's cutting back the hedge.... Fanny Jane.