steph37822

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bumpadoodledoodledoo

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I'm going to try to explain this in a non-technical way that will make sense--we'll see how it goes....I'm sure you have already guessed this--but you're body is going into "crisis mode" it's doing what it thinks it has to do to "protect itself" and it surely hurts doesn't it? My ligaments are like jello--this happened way too fast, within 4 years it's really gotten out of control, so now my muscles are like spasming boulders because they are trying to protect my ligaments. They don't know what else to do. I am trying to talk them out of it--the converstions are not going well! So now I have 3 PT's and a massage therapist, it's going to get WORSE before it gets better, I truly don't think my body has endorphins (the good feeling chemicals your body releases when you exercise) anymore. But I push on. Is there any way you can get yourself into a PT and massage program (if you have a health facility connected with a hospital they should have a massotherapist that insurance will cover) now don't let he or she MANIPULATE or ADJUST you, but she may be able to work out some kinks and get oxygen and blood moving to parts of your body that they haven't been properly reaching. About your POTS/myelopathy, stenosis......it's hard for us Julie, because all of our ailments usually tie in somehow--even if docs don't quite know how yet......so I'd say for now, my educated (though not medically ) guess would be it's your stenosis and compression causing the NUMBNESS.......when I dislocate something, and the muscles spasm---most recently my shoulder......my arms, and hands go numb or tingle, because the nerves underneath are being pushed on---that's why you lose the feeling. Because you're compressed in your spine, these nerves will go numb all the way down your legs, down your arms, exactly as you describe. This should not be dangerous, just weird. Massage can help with this. PT can help you get more stabalized--even if you need surgery, it will help you stabalize BEFORE, and get yourself stronger so that you're at a better point before, so recovery won't be nearly as long. I have a long neck--and more than once I've been told to wear a collar, especially when I sleep to stop the loosey goosey flopping around my EDS neck will do---won't do it---it will only cause atrophy of my neck muscles, and I certainly cannot have that. Fatigue is probably setting in (worse than normal POTS fatigue) because you are having muscle atrophy--you may or may not be able to see this. If you can see it, it's not good, as that means a lot of damage is done. Muscles that aren't being worked and used, and as the body ages begin to atrophy, and it will make the body incredibly tired. As I mentioned above, your blood and oxygen flow is I'm sure being obstructed to all you arms, legs, head, etc. because of your compression, and nerve irriation, so you're body is working too hard on the inside to get you to move on the outside. You are in a vicious cycle....you're body hurts, goes numb, you have to lay down, or sleep more often, the more you lay down and sleep, the more your nerves get pushed on, the more your muscles atrophy, and the weaker you get, the worse your POTS gets, the more you have problem with your bowels, etc. because your muscles are weaker, because your blood flow is not moving as it should, your circulation is off, you feel sick ALL the time, you don't want to exercise because you feel so weak, the cycle continues-----welcome to my world last January. had I not had Dr. Grubb last March, I'm not sure I would've gotten out of this!---so I hope you have talked to him about ALL of this, because he will find ways to get you moving, he will prescribe PT where you need it, and if you told him about your med fears and intolerances, I bet he'd still find one that works, or at least try. There are so many variations of meds, in pills, patches, liquids, that sometimes it takes a LONG time, but then you find the right one. Luckily I can only take very small pills and a very small selection of those, which takes out most huge pain pills, so we've come up with liquid percocet which helps my system relax enough to let me live life.....I still hurt, but it calms me down enough to get me out of bed and moving. There is simply nothing to counteract this, except to break the cycle, by getting your body back in order. Might be the hardest thing you've ever done, will probably be a lifetime commitment. I am convinced someone took my 24-year old body, and swapped it for a 90 year old during one of my many surgeries, because I don't know where all this pain is coming from. But I have a positive attitude, and I just want my life back so badly, and my PT's want the same thing for me---that I'm committed to sticking with my program, pain or shine. While POTS, stenosis, etc. are not curable, reversible, muscle atrophy is! You CAN get stronger, you can help your fatigue, and some of your POTS symptoms, and you can break the cycle--but it will take a long time. Julie, 3 months ago, I NEVER thought I'd be able to walk into the doors of the gym at PT, let alone work-out, my PT's use baby steps, and if you find the right ones, and educate them---they will all work very slowly, and can really help you with everything. I'd say talk to Dr. Grubb, or Beverly if she's good with this type of thing. I believe when you've truly had enough is when you make the best changes......certainly sounds like you've had plenty more than enough for months now. I can't change the fact that I have POTS, debilitating EDS III, and Marfan's as well, in fact if my collagen decides to start messing with the insides of my valves and veins as fast as it has my joints and ligaments, there will be no more Stephanie pretty fast, because anueryisms are no joke--so I have committed myself to doing what I can now, to get the most out of the time I'm given, and we'll see what happens. So I certainly know how you feel, and I know what it's like not having good docs helping you out, (since Dr. Grubb was out during most of my surgeries) so I wish you good luck, on getting some of this stuff figured out. I would definitely suggest trying to get some pain under control---you may have to go through some nasty meds, before you find one that works, but I think there has to be one out there, and this could be good to find something BEFORE you face your surgery if that has to happen. I can't necessarily control all my pain, but with massages, and getting stronger, hopefully someday, I will start just improving, rather than hurting while improving. If you are used to dealing with the pain and forging on, I would suggest trying to start PT, and seeing where it takes you. Take Care -Steph

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I think Earth Mother said it PERFECTLY!! we are all with you!! ESPECIALLY during the nervous moments!! My face and neck get very red and spoltchy when I make presentations--luckily it's because my blood pressure is UP! So I feel fine! But boy do my friends make fun of me, so I have to wear turtleneck sweaters! I am thinking of you, I am SO VERY PROUD of you, and I am wishing I could be there, I can't wait to hear all about it! I'm sure everything will go well. You sound well prepared, so please do take it easy, I am so excited for you Ernie!!! Take Care -Steph

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