What exactly does the burning , pain and tin... - Vasculitis UK

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What exactly does the burning , pain and tinnitus do? if left untreated.

friz42 profile image
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I am in the process of trying to find another rheumatologist as they are not listening and trying to convince me that all is ok and the remaining symptons are fibro related.

My main concern is symptons that are with me everyday and wake me up almost every hour in the night- I now have continuous tinnitus . throbbing burning pain in hips- back feet upper thighs etc etc stiffness in hands legs and the heat and sweat is unbearable. This has been going on so long with only prednisolone giving me a boost when things get severe. (I am on metoject near maximum dose- doing little )

I wonder if anyone can simply explain what damage the burning and pain is doing long term? I feel like I am burning up. I am literally soaked everyday and literally do not produce any urine hardly as it is sweated out despite being thirtsy and drinking copious amounts during the day. My feet hurt considerably as standing puts weight on them and all the bones,soft tissue etc hurt underneath and on top. My rheumatologist is fixated with temperatures and because I do not have one she says there is no inflammation/infection going on. I am hypothyroid and my temperatures run low.

I am trying to take information into the gp as he too backs up my rheumy and now thinks that exercise and mindfulness will clear up the rest of these symptons. I feel so unwell with this and am sure the burning and pain everyday for years now has made my muscles weaker. I think the burning has attacked my sweating glands and worry I am destined to be in soaked clothes forever. I am talking layers of clothes and sweating from trunk of body , legs etc but my hands and feet are bone dry and cool. under arms not affected either.

Can anyone guide me to info re burning, sweating and which consultant would know the damage this is doing. It cannot be normal to not go to the toilet as you produce so little urine. (everyday).

(I see a rheumatologist at Addenbrookes.)

Thank you

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friz42
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PMRpro profile image
PMRpro

What form of vasculitis do you have?

AndrewT profile image
AndrewT

Dear friz42,

I DON'T like, the sound, of this AT ALL! I have absolutely, no idea, at all 'What Damage You Might Do Long-Term'....it's the NOW-Term that worries me. Since you are already 'Under' Addenbrooke's you should be able to see Dr David Jane's Team, hopefully without too much Trouble. Dr Jane, really is, THE person to see about 'All Things/ Anything' Auto-immune, or Vascular. Please DO make an appointment to see his Team ASAP, you really can't do better!

Do let us know, how you Get On, please frizz- our Best/ Warmest wishes are with you.

Kind Regards

AndrewT

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