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Not sure what it is but it hurts

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1 year 6 months ago #27140 by illeatyu
illeatyu created the topic: Not sure what it is but it hurts
Hi Guy's

Sorry I haven't been around for a while things haven't been good and I've just been hanging on.

I have a question, I have what presents like Tendonitis in both my elbows, similar pain in my wrists, my finger joints, and my knees. When I stay in one position for a period of time say sitting sideways on a lounge, the pain when I try and move my knee is horrific I get the same thing in my elbows if I rest my arm on an arm rest say watching a movie and then try to move it, and I get woken a dozen times a night with pain in my shoulders, and when I try to move to a new position the pain intensifies.

Its hard to tell because of the pain I already have in my back and legs, but I think the pain and stiffness in my lower back is worse, and some nights its so bad that I cant rollover in bed.

I had an epidural 6 months ago and it worked wonders for my back and leg pain, I was pain med free with no withdrawals for 4 weeks then I got a radial tear in the medial meniscus of my left knee, and that has since flared up my back and leg pain but not to the extent that it was before the epidural.

The non back pain was there before I stopped the meds but I think they may have been masking them, I was on 80mg Targin twice a day, 600mg Gabapentin three times a day, and a slow release anti inflammatory 200mg once a day, I am now on 15mg Targin twice a day, and the anti inflammatory but I am getting almost no sleep, so now I am also taking Stilnox most nights to sleep.

So I saw two Rheumatologists one called me a Junkie and one put me on the Anti Inflammatory which helped that was about three years ago and I think its becoming less effective but there are no alternatives, I had a bone scan done which shows inflammation in my Ankles, knees, elbows, wrists and of course my lower back.

Now I know we are not doctors and I will talk to my doctor before I do anything.

Does anyone have any idea what this could be, or does anyone have any idea of what type of specialist I need to see, or alternative healer I don't really care, I've run out of options and I'm fast running out of hope, my doctor said he thinks its "Complex Regional pain Syndrome" but that there's nothing else to try, some of the symptoms are like Fibromyalgia but I don't think I have enough to be classified as that.

I'm just looking for a direction to look, maybe something my doctor hasn't heard off or a Rheumatologists in the Penrith area that's good with puzzles.

Thanks

Ricky

“All the elements in your body were forged many, many millions of years ago, in the heart of a far away star that exploded and died. That explosion scattered those elements across the desolations of deep space. And came together to form you, you are unique in the universe.

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1 year 6 months ago - 1 year 6 months ago #27142 by Peter
Peter replied the topic: Not sure what it is but it hurts
Hi Ricky,

Glad to see you back. Been a long time since we heard from you.

Mate, I just read your post and you have been detailing exactly everything that happens to me. If I have an arm bent, even just resting on the arm of the chair, trying to straighten it after half an hour is not only a really difficult job, but so bloody painful too. All my joints seem to either freeze or spasm in that one position and then when I try to straighten the limb out, it is stiff and very painful.

Also, I get this pressure type pain. The skin and the flesh that is touching the arm on the armchair hurts. The cheeks of my butt hurt sitting on the damn things. If I lean on the cupboard it hurts. Use the armrest on the car door while driving hurts. Gosh, even when I float in mid air it hurts. LOL

And as for sleeping. I get woken up just about every damn night with a throbbing arm that is locked in one position. Or some other part of my body is hurting like hell, due to pressure pain.

Ricky, you are the first person who has turned up here talking about these types of symptoms and that they are just like my own. Unfortunately, I have no answers for you. I have never bothered to go to see anyone to get it looked at, because even if they find something, it just means more drugs and I know I just can't take them. So in the end, I'll just go home still with the same problem and not having any relief.

The one thing that I have found that helps reduce these symptoms, is my going to the gym twice a week. I joined the Heart Moves class. It's a bunch of oldies. The class is designed to help people with heart problems, chronic illnesses and chronic disabilities, to do low grade exercises, but most of all, movement exercises. And some of the movements, even so simple, have helped me out so much. So I go for an hour each time twice a week and it's pretty full on for that hour too.

That's about all I can suggest to you Mate. Pain in the butt, but that's it.

I hear there are farmers offering services down the back paddock for anyone who wants permanent pain relief. Might take them up on their offer one day. Well, not really! Hehehe, hahahaha!


Peter

I wish the ring (this Chronic Pain) had never come to me. I wish none of this had happened. (Frodo Baggins)

So do all who live to see such times. But that is not for them to decide. All we have to decide, is what to do with the time that is given to us. (Gandalf the Grey)
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1 year 6 months ago #27144 by illeatyu
illeatyu replied the topic: Not sure what it is but it hurts
Thanks Peter,

Although you didn't have a solution it does feel better to know that I am not the only one :) I did a bit of digging on the Arthritis NSW web site and I think I may have a diagnosis, most of our our symptoms fit a condition known as Hemochromatosis I had the blood tests this morning and ill know by Wednesday next week, if I have it I have to give blood every 6-8 weeks for the rest of my life (and hey that's not a bad deal :) ) better than bloody tablets.

It is a build up of Iron in the blood caused by a defective gene (not sure how I only wear shorts) but long term it causes most of our symptoms, and liver and heart failure. Now if it is diagnosed and you get your iron levels under control it does not progress and if no damage has been done to your organs none will be done, however whatever has been done is not reversible I.E the joint pain.

One of the other recommended treatments is exercise which may be why your feeling better with it, but I would recommend having a look at Hemochromatosis on a reputable web site and if you think like me you may have it, go and get your doctor to do the blood tests the iron level ones are free, and the gene marker one is $57.00 or free if you meet the criteria so ask your doc about it first.

The web site I went to is arthritisnsw.org.au/arthritis/informatio...romatotic-arthritis/

Anyway I am going to be more active on the site again.

Warm Regards

Ricky

“All the elements in your body were forged many, many millions of years ago, in the heart of a far away star that exploded and died. That explosion scattered those elements across the desolations of deep space. And came together to form you, you are unique in the universe.
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1 year 6 months ago #27149 by Peter
Peter replied the topic: Not sure what it is but it hurts
Thanks for the info Ricky. Please let me know if you get a positive test result. That will help me determine whether or not I will do the same. Certainly worth looking into that is for sure.

Peter

I wish the ring (this Chronic Pain) had never come to me. I wish none of this had happened. (Frodo Baggins)

So do all who live to see such times. But that is not for them to decide. All we have to decide, is what to do with the time that is given to us. (Gandalf the Grey)
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1 year 5 months ago #27190 by illeatyu
illeatyu replied the topic: Not sure what it is but it hurts
Hi Guy's,

Ok I got the results and it's not Hemochromatosis, so both good and bad new, good cause it's not, bad cause we still don't know what it is.

So now I am having Ultrasounds on both elbows and my doctor thinks I have tendonitis in my hands, so we get the Cortisone in the elbows first and then go from there.

Anyway ill keep you updated.

Regards

Ricky

“All the elements in your body were forged many, many millions of years ago, in the heart of a far away star that exploded and died. That explosion scattered those elements across the desolations of deep space. And came together to form you, you are unique in the universe.

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1 year 5 months ago #27195 by Harpy
Harpy replied the topic: Not sure what it is but it hurts
Hi Ricky
Apart from my spine , hip, knee issues I also have fibro, and your symptoms are just like mine.
You can't even have a good conversation on the phone as you can't hold the thing up to your head, swapping from ear to ear to get each elbow a break is cruel, easier to lay on bed with phone jammed between ear and pillow.
Though I must admit my ankles are my only pain free joint..
Good to have you back I have been going through old posts ,
Good luck with finding the right diagnosis.
Harpy
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