By Michelle Cestle on Wednesday, November 05, 2003 - 02:28 am:

Okay. I know hypermobility is genetic - my Mom, Uncle, Grandfather and some cousins are hypermobile too. I've read the requisite studies on how we have a collagen III defieciency and all that.

But I still wonder if some of this isn't nutritional, in large part because of the articles at ctds.info and the various articles and books i've read on prolotherapy, all which insist connective tissue disorders are caused in large measure by the standard American diet and the use of anti-inflammatories. Not to mention a medical clinic I visited once, that subscribes to the view that virtually every condition is nutritional in cause and is best treated by diet and supplement. I thougt it was all a little quacky back then, and couldn't afford the tests and supplements they reccomended anyways.

But I've read lots more and I wonder if maybe they are right. That my genes make me particularly susceptible to my varied problems, but that diet and supplements can dramatically reverse the damage and get me back to an active life, even "cure" me as long as I maintain a diet with no processed foods, high in nutrients, etc.

I don't know what to do or who to believe. I just had my second surgery, I'm supposed to have at least one more, and my primary physician is reccomending cortisone shots. All the while, I contiue to take anti-inflammatories, praying they aren't worsening the problem like the holistic folks say they are.

I'm forced to keep working with traditional medicine that says there is no real hope, just keep taking these drugs, get some shots but not too many, have some operations, keep exercising, and maybe you can return to work soon. But I've read enough to know my chances aren't real good.

The holistic path at least offers real hope. But I can't try that because my HMO won't cover it. And I have to stay on my so-called treatment plan if I want any hope of eventually recieving disability payments. Those payments are my only present hope to being able to even afford nutritional therapy, prolotherapy, and the like. So I feal like I'm posioning myself so maybe I can get money, use it to detoxify my body, and get my life back. It's such a joke.

I dont even know what my question is. Is anyone else this confused? Do you think there is anything to the idea that some of our problems are caused by the complex combination of genes and nutrition, not genes alone? Do you ever hear the "it's genetic" thing as a lame argument as to why your doctor isn't helping?

Some of the stuff I've read, particularly on prolotherapy, hits on the idea that these holistic doctors perform "real" exams of their patients while most traditional doctors don't. I think this is part of my frustration with much of the system I've been through - Doctor not even touching me saying "Put your arm out to the side. Raise it. Lower it. Hhmmm, let's get an x-ray... I just don't know what's wrong, other than that you're hypermobile" Well, you know doc, maybe if you tried a little harder, tried to figure out the exact source of my pain at least then you could get the steroid injection in the right spot...

Another thing that makes me wonder if the holistic people are right is the way my docs have treated my muscle spams - "here's a muscle relaxer, take it every night, even though people are never supposed to need these long term". WHY do I have spasms in the first place? Oh, hey look, it's a well established fact that magnesium is needed for muscles to relax - why didn't they ever ask or test to see if I get enough magnesium in my diet? What other possible causes and solutions have they passed by because it's genetic and incurable?

I know I probably sound like I need to "accept" my body or something. And maybe I do. I've never been one to give alternative medicine a chance, too much the scientist for that. Why now? Maybe because I'm desperate. Maybe because of my readings. Maybe because I've been told after some testing and such at a clinic that a big chunk of my problems are nutritional. Maybe because I know people who really buy into the holistic mindset.

I don't know!! Has anyone else really looked into the nutritional arguments? I'm not looking for people, who like me inthe past, have discounted it without ever exploring the claims. But if you have given the holistic approach a decent study, please help me navigate this, whatever your conclusion was!

I'm just 22, btw. If the holistic folks are right, the combined effect of nutritional deficientcies and NSAIDs are going to have me in really bad shape by time I'm 50... HELP!
Michelle

By Lucy on Wednesday, November 05, 2003 - 10:22 am:

Hi Michelle

I don't know enough about the whole of it. But these muscle spasms, are they like cramp? Because if they are it could be due to not enough salt in the diet, as sodium and chloride ions transmit the nerve and muscle signals in the body. The people on TV who always say "eliminate salt" cause a lot of problems because of this. However, if you have large amounts of junk food and crisps then this won't/shouldn't be your problem.
I think many drs are too busy to actually think about what they say, hence "oh, it's just the hypermobility". Have you sat down and talked to your GP, because they generally help a lot, especially if you can clearly explain whats going on and how bad you feel about it all?

Lucy

By Greg on Sunday, February 22, 2004 - 05:43 pm:

Michelle,

I would love to help you out with dietary and lifestyle suggestions. Prolotherapy has helped me significantly with specific joints, but as far as everyday living goes, my diet and exercise have made the biggest difference in my life. Once I changed my diet, EVERYTHING got better. No more colds, infections, acne. What we put into our bodies means everything to our health. I used to visit this website and read about people changing there diet and never thought that it would do anything, but I was so wrong! Unfortunately, changing my diet and using supplements has not tightened my joints. I think that this is genetic, and that all the good food in the world will not strengthen the loose ligaments. However, pain is another thing. All my joints are loose, but only a few cause pain...therefore, it is not simply the looseness that causes pain. If you have any specific questions, please feel free to ask.

Best wishes,

Greg

By Michelle Castle on Sunday, February 22, 2004 - 09:56 pm:

Thanks Greg. I had long ago forgot about this post. I had surgery in October on my hand that really helped, and will probably have a similar operation on the other hand in April. I live with my Mom since I'm "disabled" and her dietary habits are horrid - the fatty foods and simple carbs just doesn't go well with my digestive system. I have made some dietary changes lately because I'm tired of feeling icky, but it's hard sometimes because I don't want her to have to cater to me any more than she already does. Now that I've finally been awarded Social Security disability benefits, I'm moving to an even better diet and will likely check with the holistic doctor I know, get on supplemants, and maybe do some prolo on my shoulders. I'll keep you in mind should any specific questions arise.
Michelle