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Hi. My wife Eve has chronic sarcoidosis in both lungs and is in bad to severe pain all day. She is frequently bent over in tears with the pain. Is this common with sarcoid? She can cope with the associated sarcoid problems but the pain is the mayor problem to her quality of life. She is 78 and now needs help/assistance all the time. Been on most of the pain killers none of which seem to help much. She is on pregaviston at present. Pain is always at or around (radiates from,) the biopsy site which was over 31/2 years ago. Told it was a over night stay which ended up as 3 weeks – x-ray every day. Strongly suspect students were involved. We are told by all that its nerve pain but we don't believe it. Until around 2/3 months she often wake in the mornings in little or no pain.. But when she starts moving it starts. If you touch the area it can hurts. It the car hits a small bump it hurts. the more she moves about more it hurts. But nobody listens. Recently the pains got much worse – disturbed sleep, awakes in pain and often needs my assistance to get out of bed / chair and to the bathroom all due to the pain.
Had to take Eve to A&E on 1/1/15.- two days after our GP said she had a minor infection and would be fine. They saw her quite quickly, put her on oxygen, drip, injections, x ray etc. then moved her to intensive care ((AMU 1). mechanical ventilator, CO2 in blood v/low sodium, high blood pressure water in the lunges. Just glad she didn't have a serious infection! Discharged after 2 weeks, Extensive chronic pulmonary sarcoid , fast af, ccf . medication on discharg – Lansoprazole 30mg. pregabalin 75 mg x3. prednissolone 40 mg. bisoprolol 75 mg. furosemide 40 mg.
Would ask for referral to a sarcoid clinic but it would mean a London hospital involving travel - stairs and walking which she would not be capable of and its unlikely at this stage the treatment would be any different. Considering a private consultation – don't think it will help but at least we should get the basic facts of the situation. Has anyone tried acupuncture or pain killing injections for sarcoid?
Appreciate any advice on painkillers that work for anyone in/with a similar condition.
She gets an abundants of sympathy what she needs is some effective pain control and up front advice on her condition. Appreciate any advice on what painkillers that work for anyone with anyone in/with a similar condition. Thanks
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