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Post by nuttysmallholder on Oct 23, 2014 16:29:33 GMT
Hello Everyone, My husband received a diagnosis of TAM yesterday. It's only taken about 6 years to get this far... and now we have hundreds of questions, of course... I wondered: - whether anyone had any insight into the mechanism by which the tubular aggregates are supposed to cause pain?
- whether the comments about exercise 'causing damage' (elsewhere on this forum) were really about permanent damage or about incurring a 'payback pain period' [not sure if there's a technical term for it]
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Post by georger on Oct 27, 2014 22:45:44 GMT
Welcome,
Six years, I think we can all empathize with that.
Two excellent questions.
1. Of course there is the muscle soreness that everybody gets from over exercise, but occurring at a much lower level of exercise in TAM patients. Then there is a sometimes excruciating pain in some (most?) requiring powerful analgesics. I have looked for a cause for this and never found it. It may be as they say on QI, "Nobody knows."
2. There is definite evidence for over exercise having the potential to cause permanent damage and not just a longer than normal recovery period. My own experience agrees with this. 18 years ago and years before a diagnosis, there was nobody to warn me and I fought the disease and did a lot of damage. These days I take it easy and the disease progresses only slowly. Another TAMite used to go on 10 mile hikes and deal with the resulting pain anyway he could. In six months he couldn't walk across the room.
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Post by nuttysmallholder on Oct 30, 2014 6:46:34 GMT
Thanks.
That's helpful in the context of the consultant recommending physiotherapy and the physiotherapists recommending daily exercise sessions in a pool to try to build stamina. Hmmmm...
A follow-up question... with fairly low levels of activity, muscles tend to shorten - putting them at a mechanical disadvantage for any sort of exercise and making them work harder than they need to. And maybe creating more pain as a result...?
I saw a post elsewhere on the forum about someone doing stretches for hands. Has anyone any experience in using gentle stretching - especially for quads and hamstrings?
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Post by Craig Lane on Oct 31, 2014 17:23:54 GMT
First of all welcome to our forum I'm sorry you had to look for us.
I find everyday activities enough exercise, bending and stretching unnecessarily is beyond me now. As far as physo' and water aerobics is concerned, I think that's a bit like using wine tasting as a means to treat alcoholism. I think if you are with TAM, which is a chronically degenerative disorder, making life bearable for the longest time is of prime concern. Most of us have been active / very active or just plain reckless in our pre-TAM days. Some of us have tried to hang on to that life style as long as possible others have chilled those riotous ways and for the most part are behaved. Being in water I find is great as I don't need to hold myself up, the downside being that when you do get out you feel like you have landed on a planet with several times our gravity. Exercise is get up and dressed, climbing the stairs to bed and all the frustrations of trying to do normal everyday stuff in between. Trust me a full cup of tea with a little handle can get away from you with astonishing speed and getting up after clearing the ensuing mess is a workout in itself. I try to manage as long as I can without chemical pain relief as this is going to be a long road (I hope) unless a miracle happens.
As we all have different levels of TAM and different pain thresholds it is a very individual thing. Pain is natures way of telling you that you are still alive, it is also natures way of telling you not to do something. The pain felt by Tamites is not the same as the athletes wall to be pushed through. Try it if you like but, not my recommendation.
Not quite sure where in the world you are but assuming you are receiving whatever care and support is available to you I would say don't fight to hard to do things you don't need to do. Do what you need to do to be as independent as you can for as long as you can. Let's face it unless the Queen /President or other notable become diagnosed there is little chance of any research being done to cure or control this condition.
Having said all that, it has taken me a few days of stop starting to write this. There are two ways to look at life what you have or what you don't. When you wake in the morning give thanks many others didn't make it that far. Don't give up or give in but remember to make your life as easy on yourself as possible. If you can smile it produces endorphins and makes everyone else wonder what you are up to.
I hope you continue to post on our forum and make it you own. It is an important point of reference for the few that we are.
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Post by georger on Nov 4, 2014 3:09:31 GMT
More excellent questions. For many muscle and pain disorders the recommendation is for gentle concentric exercise, gradually increasing to build endurance. I have done this in the early years and found it very beneficial. Heating muscles seems to relax them and reduce the chance of injury, hence exercise in a heated pool can be very helpful. Stretching applies a lot of strain to muscles so that the heated pool helps here too. Not sure about every day, maybe every few days to start with and see how you go. The key to success with this is patience and always taking it gently. Better too little than too much. Of course, later TAM progresses, not helped by the unavoidable episodes of too much exercise and then most exercise is to be avoided.
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Post by larrysc on Feb 25, 2015 3:33:00 GMT
I fall in the category of still fighting although I know I should not. The advise here is correct. Do yourself a favor and take it easy. In the years ahead, you will be glad you did.
As I said, even after knowing I have TAM, I still fight to do more than I should (NOT good). My excuse is I have to get this project, or this project, or this project done while I still can. I was in the process of building a one of a kind car when TAM really hit me. That was 7 years ago and I am still fighting to get it on the road. Oddly, I find once I get going, I actually feel a little better when I'm working on the car. Of course, there is the payback when I stop and it can be excruciating. Another outcome, is when I have to take a pain day and rest, I feel the worse on those days and have to take even more pain meds. It is a delicate balance between morphine and exertion and like I've said, I overdo. I'm a stubborn ol' cout. With all that being said, TAM is slowly taking control away from me. I already use a power chair for any significant walking and even use it around the house to save my muscles for my projects. You want to put this off for as long as you can and while there are no certainties as to how your individual case of TAM will, or will not progress, the best thing you can do for yourself is slow down and take it easy. That my friend is the best way to delay the onset of pain.
Good luck to you,
Larry
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Post by larrysc on Feb 25, 2015 15:40:42 GMT
I should like to add one more point as to over working your muscles. In late 2014 I was eager to see my doctor for my regular checkup because I had lost 32 pounds (I had weighed 221 pounds). 2014 was the year I started taking more & more pain meds so I could keep at my projects. Anyway, I had my little spreadsheet chart and proudly showed my doctor. She was appalled. Her feeling was that you don't loose that percentage of your overall body weight for no reason. Even though I assured her I had been trying to loose weight, she ran some blood tests. On my next visit we found the blood work to be normal (I think they were testing for cancer) and here is the bad part. At least 75% of my weight loss was from loosing muscle mass. I know TAM is not degenerative, but it seems if you continue to abuse your muscles you can and will loose muscle and of course what's left behind is damaged.
There was a question as to how TAM actually damages muscles. The best explanation I've had follows. Tubals form in the muscles. A tubal is like a rod, or needle that sticks through the muscle so that when a muscle cell tries to retract, the rod, or needle, prevents it or at least tears at the muscle cell causing pain. In the case of naturally forming tubals such as after a strenuous workout, the tubals dissolve in time. In addition to lactic acid, tubals are part of why a normal person's muscles hurt after a workout. In the case of TAM, the tubals do NOT dissolve. This is why it is so important not to over use your muscles because when you do, you create more and more tubals = more and more pain. The trump card with TAM is that as you use your muscles less, they become weaker and attrifee thus making it easier to hurt the muscle and create more tubals. A kind of self fulfilling ailment. Hope that helps with understanding the disease. It's not technical, but portrays what happens in general terms pretty well I think.
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Post by nuttysmallholder on Apr 17, 2015 13:32:53 GMT
Hi Larry,
Thanks for sharing your experiences. It seems like having TAM makes life one very precarious balancing act.
But I guess that's true for everyone... I just wish it didn't hurt so much, though...
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