confused?

purplesparkle

Hello everyone-here I go again as I have just typed out a post & lost it :roll:

my story-well the quick version

I have been in pain for about 6 years now-it all started in my left shoulder and collar bone gradually then got really bad and I could hardly move it. I have a larger bone at the end of my collar bone. Then this all progressed when I started getting pain in my neck, jaw (diagnosed with TMJ problems), back, knees, elbows, hands, feet, basically nearly all over my body. I'm on tramadol 3 x a day and codiene phosphate when I need it.

I have just had a diagnostic steroid injection to see if it helps and apparently it indicates a inflammation arthritis if it helps which so far so good and this is the best I have been for many years.

Although I'm still in less pain this morning I have woken up with that familiar feeling of my glands fighting something-anyone know what I mean?

I have also noticed that my body twitches more-like ticks, especially during the night (my arm, hand, leg or body will just flick or twitch out)-should I have told this to the Consultant??? Could it have anything to do with the arthritis or medication?

I just really need to know what's going on-I hate not knowing why or what!

If anyone has any advice or info I would appreciate it-thanks, Purple with only a little sparkle today xxx

tiggernut

Hi purplesparkle,

Sorry can't help but just wanted to say hope you are feeling better soon and that steriod injection kicks in.
Take care,
Anita x

purplesparkle

Thanks Anita xxx

stickywicket

I think you need to take all this to the doc, purplesparkle. We can't diagnose stuff for the very obvious reason that we're not trained in diagnostics.

I'm glad the steroid jab is helping. Was it your GP who gave it to you or a rheumatologist? If it helps then presumably you will see a rheumatologist for further treatment.

I can't help with the gland stuff. I've no idea when mine are up or down though a general feeling of lethargy is quite common. I don't think I've ever done the ticks/twitches thing.

magenta

Hiya Purplesparkle,

I've had probs over 20yrs or so. It's only now that it's all coming to a head. I have fibro, sero -ve arthritis and OA in several joints. Like you, I have pain in near enough every joint,at the moment, in my hands, fingers, thumbs and ankles.
I also have TMJ and severe OA in both sides of my jaw with cervical spondylosis thrown in. I've recently been diagnosed too with a bulging disc in my neck. I'm telling you this bit because when my neck/jaw plays up, I get a feeling of swollen glands in my neck-as if I'm getting a cold or something? My ears get sore too, again as if I'm getting an infection. Does this sound familiar? I also get the ticks, even in bed. When I'm writing, my hand shoots away from me!

I'm seeing my rheumy tomorrow and I'm bringing the tick thing up so I'll let you know if I get any answers.

I hope you're doing ok and you've regained some of your sparkle

Magenta x

Colin1

Yea i'm wuth sticky on this one get yourself down to the GP and have a chat with him.
Colin

purplesparkle

Hi evryone thanks for the replys

OMG Magenta-I have ear problems (pain, itchy, weeping, but the itching is the worse sometimes I just want to rip my ear off) and I keep being given ear drops.

I also get tick/twitches in bed and sometimes they wake me up (once it felt like I had woken out of a seizure), I struggle to write and my hands have thrown/dropped things as I have tried to move my hands carrying a pen or something etc but this hasn't happened for a while.

How did you get on with your rheumatologist? I'm going to see mine Tuesday so I will mention it as well! x

RoseEllen

I get these tics too!!!! I did try to explain to my rheumy but he just said its the fibro.

I dont think it is though.

Please post if anyone does get a straight reply from their rheumatologist :?

magenta

Hi again,

My rheumy appointment was awful-they discharged me. I forgot to ask about the tick thing but I think it's to do with my neck.

I wish you well for your appointment on Tuesday, pleas let us know how you get on,

Magenta xxx

smol

I suffer the tic/twitches you describe. I was put on low dose diazepam once a day to relax the muscles and it is working. I have far less of them now.
I have cervical spondylosis too and like you my ears drive me crazy with itching. I worked out it's an allergy to something and found an antihistamine has really helped.

I dont suppose you are very bendy/double jointed are you? If you have OA is all over your body and general hypermobility you might want to look at hypermobility symdrome.

Good luck

purplesparkle

Hi guys, thanks for replying! I saw the rheumatologist today and I'm confused evenmore now???? Last time I went I was told that if the steroids worked (which they did) I probably have inflammation arthritis but today I saw someone else and he didn't even seem fussed that the steroid had helped??? Just said he can't see any signs in blood or xrays that I have inflammation although I have the symptoms of it. He also didn't seem bothered about the twitching/tick thing??? But one thing he kept going on about & the whole appoinment focused on was the fact my vitamin D levels were 'rock bottom' so I have been given Vit D boost tablets to take for a week and then lower dose ones to take after that. He did say that it could cause bone aches and pains but my problems have been going on for about 6 years???
He does want me to have a MRI on my back and I had my bloods taken again and haven't got a clue what for????
Why is it all so confusing....

smol I've never heard of cervical spondylosis???? so I'm going to have to do some research and I use to be double jointed and could do the splits, touch my head with my feet while on my stomach etc etc when I was younger but I find it hard to touch my toes now

I just want to know and each time I go to the hospital I think i'm going to find out and then I get told something else and have to wait until next time.

amboritic

Cervical Spondylosis is osteo arthritis of the neck, sometimes called degenerative disc disease.

I was diagnosed with that in 2001/2 after an RTC at work.

Very common as it is wear and tear really.

Most people have this as the intervertebral discs desicate with age, or dry out and shrink a little is the easiest way to understand what is going on.

Some people can be completely pain free, some can have very severe pain radiating into the shoulders, upper arms or down into thoracic spine.

There are surgical options like artificial discs to replace the damaged interverterbral disc or fusions. But from my experience they rarely go down that route unless you have some form of nerve root compression or other neurological symptoms.

There is a lot of info on the internet, but I still find the best relief from the pain is good old deep heat rubbed in.

purplesparkle

Thanks for such a quick reply amboritic, a few years ago I was told I had some mild wear and tear on my neck??????? I do get shoulder, neck and back pain but I'm not sure it explains everything that's going on (TMJ pain, elbow, knee stiffness, hand pain etc???).

I just hate the not knowing! :roll:

magenta

Hi again,

I too have got no Vit D in my body. I was told to buy tablets from a well known chemist, as long as they were 25microgram tabs. I had severe hip pain last year which the rheumy said could have been caused by the lack of vit D. I also used to be quite good at gymnastics but like you, I can't touch my toes

Take care,

Magenta x

smol

Hiya peeps
If you used to be able to do all the bendy tricks hypermobility syndrome is still a possibility. It explains my arthralgia without inflammation. It basically means the ligaments and tendons are weak and lax, so the joints get an extra hammering as their support is severely lacking. This leads to early onset OA. It doesn't just affect the joints it can affect ALL connective tissue as its a collagen disorder. for me this means IBS, raynauds syndrome and short sightedness as well as the OA, bulging and prolapsed discs. I get severe muscle spasms and a lot of general pain along with nerve pain. The muscles have to do the job of the ligaments so they get fatigued quickly and I accumulate micro injuries by the score. (somehow managed to sprain my shoulder whilst asleep) I'm not nearly so bad as some, who dislocate various parts of their bodies daily.
It tends to be inherited (tho not always) and I can trace it back to my great grandfather who could touch his nose with his tongue (gorlins sign) and was not able to work. It affects a lot more women than men (hormones) and it may not become a problem for many years, only to suddenly appear. It's very frustrating as there are no tests that prove if you have it so everything else has to be tested for.
If you are interested or think it may be affecting you please PM and I'll send you a website link to a lot more info.

purplesparkle

my friend has been told she has hypermobility syndrome but she can still touch her toes :shock: it's all very interesting smols and confusing at the same time!