Gerhard

Good Morning,
I am a 57 year old male living in Sunny Devon, England.
About 6 years ago after holidaying in Florida I was rushed into hospital with severe pain in my collar bone. After about 2 years of frequent hospital admissions I was diagnosed with a rare inflamatory bone disease called CRMO- Chronic Recurrent Multifocal Osteomyelitis. In a nutshell I am prone to episodes where any of my long bones become inflamed and swollen, at the same time this can contaminate my blood and cause all sorts of problems. The only treatment is pain control and I am on permanent daily doses of 200mg of Morphine in tablet form plus Oral Morph as a top up, I also take Diclofenac 3 times a day to help with the inflamation.I had an extremely bad attack about 18 months ago when it attacked my lower spine and destroyed 2 of the lower discs.
On top of this I also discovered 3 years ago that I have severe axonal peripheral neuropathy. I cannot take steroids because of the bone complaint so my specialist arranges for me to go into hospital for a 5 day course of immuglobulin infussions about twice a year. These can have unpleasant side affects such as severe headaches, vomiting and huge boils appearing about a week after the treatment.

I get all the normal burning, stinging and tingling in my feet, legs, arms and hands plus my ability to walk any distance over 100 meters is getting more difficult as the months go by. This is due to muscle weakness in my legs.

I have lost about a tenth of my body weight which is quite noticeable as I am not a large person.

Lately, I have found it more and more difficult to get around, I feel constantly tired and lethargic, my pain levels seem to have increased or my ability to cope with them has decreased to such a level that my GP wants me to go back into hospital for an extended period which I have point blank refused. I have spent a least 18 months in hospital during the last 6 years and that is more than enough. However my latest blood tests have proved that I am severely lacking in iron, this has happened quite quickly as 3 months ago my iron levels were satifactory. I have no idea how or why the levels have dropped so quickly. He has given me yet more tablets, 400mg of an iron supplement a day.

I am supposed to take Gabbapentin to ease the PN symptons, but I cannot get on with them as they make the tiredness and lethargy far worse.

Is there anyone else out there with similar problems, it makes me feel very lonely and depressed especially because I have an extremely fit, outgoing wife who never stops working, excercising and getting everything from life that she can. She is supportive to a point, but cannot understand that in this day and age I should be suffering any pain or discomfort. I find I have to hide my pain and disabilities from her in order to try and lead a normal life, however, this is getting more difficult as time goes on. I have a disability scooter to get around on, but she hates this which means we rarely go out together if it involves walking.

I would really appreciate any help or advice.