My name is Gerhard but I am known as Gee, I am a 58 year old male from Exeter, Devon, UK. Up until 8 years ago, I had a pretty healthy life, 15 years in the Armed Forces, a keen runner (long distance) hiker and general outdoor person. I enjoyed Sub aqua diving and have been lucky enough to travel fairly extensively around the world.
8 years ago following a holiday to Florida, I suffered an extreme pain in my right arm/shoulder. Within a few hours I was taken into hospital where it was discovered my bloods were not right and I had 2 mysterious bone lumps appear, 1 on my shoulder and the other located around the top right of my rib cage. Eventually these lumps were surgically removed and sent away for analysis. But all appeared normal.
For the next 5 years I was in and out of hospital like a yo yo, the main problems were bone pain and weakness in my legs and arms. I collapsed several times and my blood CRP levels would shoot up indicating internal bone infections.
After just about every type of test/scan known to man kind, I was finally diagnosed with CRMO - Chronic Recurrent Multifocal Osteomyilitis (Sterile).
At about the same time as the diagnosis was made, I started suffering from a lot of nerve type pain, pins and needles, burning feet and hands, numbness in certain areas of my body etc.
After a series of neurological tests it was discovered I have severe peripheral/motor neuropathy.
It seemed fairly logical to me that the 2 complaints must be linked, but neither of my specialists agree with my beliefs.
2 years ago the Osteomyilitis struck again in my lower spine area, unfortunately it also poisoned my blood and for 2 or 3 weeks it was touch and go. I was kept in hospital for nearly 3 months and had to wear a plastic corset type support for a further 6 months. It has left me with a badly damaged lower spine.
I am due to see the spinal surgeons in a week or two as it turns out I have 2 areas of narrowing of the spinal chord (Spinal Stenosis)that are causing me problems with walking, neck, head and ear ache and weak arms.
My medication includes MST (Morphine) 200mgs per day with Oral Morphine whenever required, Volterol/Diclofenac (anti inflamatory)150mg daily, Progabalin (Nerve pain control)200mg a day, 8 x 500mg paracetomal a day, plus a few Vitamin Tablets recommended by the pain clinic. I have also had a series of Gamma Globulin infusions which necessitate a 5 day hospital stay with a 3 pint infusion each day, I receive these every 4 months.
I am convinced that I have been incorrectly diagnosed, there must be a common denominator somewhere, but once you have been given a label (CRMO) it sticks and because its a fairly rare label, very little is known about it,- in this country anyway.
Thats the history, the realities are that I spend every day in pain and a slight 'not quite with it' feeling due to the drugs. I am fairly limited in what I can do and dread going to bed as it is the most uncomfortable position for me. I get very little sleep and on the occassions when I do sleep, it takes me at least an hour or more to straighten up and walk around the house properly, my feet, ankles,knees and hands swell up and are also very painful. Another problem is that physically I look very healthy and fit!
Has anyone else suffered from this type of complaint or even heard of it?
Also does anyone know of any type of regularly populated chat room where you can talk to people who suffer from constant pain and will understand where you are coming from. Most of the time I cope well, but every now and again the pain wears me down and I need to be able to talk.
If you have got this far - Thank you for reading this, I have tried to condense it and am sure I have missed out lots of bits, but you have the main facts.
Hope I get some replies.
Gee
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