TAM progressive or not progressive

[Craig Lane]

That is the question. Whether it is nobler in the mind to think it won't get any worse or suffer the slings and arrows that are the reality of a genetic disorder...
True there is a vast range of symptoms but from research I can only conclude that as I have had this disorder from birth and as a younger man have been stronger than average and reasonably formidable. This condition is progressive, slow maybe it took over forty years to slow me down enough for the doctors to examine me. So I reckon on another forty to put me on my arse..
Muscular pain seems to be the most potent symptom, cramps, ticks and general knackardness follow down the list. Some drugs help some folk endure this some have just learned to live with it.
If you can I found it best to sleep where and when you can coz an over tired body will tick and cramp you into the drugs bottle or worse.
Try and laugh at you inadiquasis (thats either latin or poor Spelling) rather than getting frustrated. Anyone remember ' Desiderata' a poem allegedly written by an 8th century monk. Every one had a copy hanging in the loo in the 1970's. Find it and read it try to live by it. Stress causes raised acid in the myopic muscles and thats the same as over exercise..........

Question: Why do the put child proof lids on medicines for folk with arthritis and muscle weakness??? Are they taking the P OR WOT? ;D

[denny]

Well Put! As I now think, I have likely had this for several years as well. I also was a strong young man, building a home by myself while working 60-70 hours per week at my regular job. After reading your comments, it made me think about the weakness and pain getting to the point of being pretty bothersome in my mid twenties. I had some attitional problems (ruptured disc, diabetes, etc..) that I attributed this to. I also had my family physician say that he thought I had Fibromyalgia at around 30 years of age. Much of these problems were likely related to the TAM or Lupus. (which neither was diagnosed until the past year. Makes you wonder how many there are that are either fighting without a diagnosis, or being misdiagnosed. The world is a relly big place!

[texasmom5]

My son-in-law was just diagnosed with TAM. What have you found to help with the pain and tiredness? He was a very active, workaholic and has now become depressed and inactive.

[Craig Lane]

I found this. Do what you can, when you can and enjoy it. If tommorrow you are curled in a ball with silent tears like a first time gym visiter. Thats tomorrow. Push a little. Do the things you enjoy doing. I used to hunt, fish, ride motorbikes, sea canoeing and climb mountains. Now I still hunt but sit in the sun and wait for the birds to come to me, I don't have the strengh now to hold up a motorbike so I got a landrover to take me where I want to go. I still fish but now I take a more leisurely approach and don't have to cut it short to go to work. Climbing mountains? Landy will go anywhere and my spaniel and I still enjoy the fresh air at high altitude.
The alternative is sit in a chair and wait for God. Sure it's frustrating when you can't open a pack of peanuts or a jar of jam thats why we got knives and door jams (and if real desperate the wife). The doctors may have taken your job but don't let them have your soul.
Do what you can when you can and don't think to hard about whether you can. Let tomorrow look after itself. After all pain is natures way of telling you you are still alive. Above all try to keep a sence of humor. Laughter produces seratonin which makes you feel good.

[georger]

Another point of view. There are so many uncertainties with TAM but one thing you can be sure of, it will change your life. You have to go with it or give up on life. My own story is that I was a keen hiker, probably addicted. Couldn't look at a hill without wanting to climb it. Up before dawn in the middle of winter before work. So when the undiagnosed muscle pain came along I fought it, climbing hills with my legs on fire. This did a lot of damage. Craig's message is to not give up, but don't overdo it as I did. When the physical is too much, look to your other strengths and talents and keep busy. A good start is to do one significant useful thing each day and you will find yourself doing more. I fix computers and make electronic gadgets. It's not hiking but keeps me busy.