[Bobbi]

#1064647

While we are hyperthyroid, we lose actual muscle mass, particularly in the legs, arms and chest. This muscle does come back to some extent once we are at stable, controlled normal levels of hormone. But, one endocrinologist at one of our conferences described it as "mushy" muscle, which needed to be exercised and toned to rebuild stamina. I also noticed while I was hyperthyroid that the ability of the muscles to "regroup" after exercise of any type was impaired. I had to have a cardiac stress test while I was hyperthyroid (but not diagnosed), and my legs would not work to keep me on the treadmill. The muscles just stopped working. I tried to find out what was happening, if only out of curiousity once I was diagnosed, but other than that one comment from an endo, I could not get answers on the muscle question from anyone. I tried doctors, physical therapists, you name it. So, there are still some "black" areas where nobody really knows what is going on.

I found yoga to be impossible. My muscles were too weak. And the problem is if you push them while they are still weak, you can injure yourself. And, yes, even yoga instructors are injured by yoga. So, what I did instead was sit on the floor and gently stretch the muscles every day. And I would sit in a rocking chair and rock. (Yes, that does move/exercise the muscles a bit.) And when my docs cleared me for exercise, I signed on at a gym inside my local hospital where there were trained exercise physiologists to help me rebuild without injury. When my muscles were tested there, it was discovered that I had EIGHT PERCENT of the strength normally found in a woman of my age. So you can imagine how carefully I had to be to start exercising again. I used small paperback books as "weights" for a while.

I mention all of this because you really do have to understand that while exercise is necessary to getting you back into shape, you need to take BABY steps at the beginning. And since your doctors have not cleared you for exercise, you probably need to confine yourself to gentle stretching and rocking chairs until further notice. You might, also, ask about slow walks. Getting out-of-doors and walking can boost spirits, and it does provide a gentle exercise, especially if you do it every day. Doing any of these things can help keep you focussed on progress rather than some absolute of "EXERCISE!!!" that you might have in your mind. If you see progress, it will make this awful time go a little bit faster.

Wishing you well,

[MyTAnswers1]

#1018417

I have had Graves now for two years, had an RAI in January 2010, have gone from hyper to hypo, bounced up and down with my lab results, and am currently adjusting levels of the Levothyroxine as my levels just change very slowly. My last lab results were on 06/29 and show TSH of 0.20 and Free T4 of 0.63. All through this time period my legs, especially my thighs, have felt like blocks of wood — very little strength, very little flexibility and a continuous ache when I am on my feet. Plus my balance is off a little so I need to be careful how and where I walk. Is this "normal" for Graves? I know it affects the muscles but how much and how long. I can’t seem to get an answer from my doctors, just that it happens. They don’t recommend exercise for me at this point in time. I tried chair yoga and that seems to help but really makes me tired. I am worried about losing any more of what little strength and stamina that I have left. Can you please give me some information about this very real part of Graves. Any suggestions for improvement would be helpful. I should mention that I am currently at my highest weight ever. I know that does not help, but without exercise, what can I do besides watch what I eat, which I do.
Also, I want you to know that I really appreciate this website. When I was first diagnosed and could not get any answers or clarity about the multitude of symptoms and what was happening to my body, your website was a God send for me as it provided information that I desperately needed and for the first time I did not feel like I was alone with this disease. Keep up the good work. Thank You for all you do.

[cynthia]

#1064648

good morning I am still hyper but can really understand your anxiety related to muscle weakness I am older but a few years ago had both knees replaced and after that loved to walk miles also ran a 30 acre farm while working as a full time RN so now I can hardily walk I am a A type personality and am not handling this well am angry and cry sometimes in responce to my extreme fatique and muscle weakness…. this is a horrid disease and as a nurse really never realized how sever it can be and slow to improve I am having surgery soon hopefully but this post worries me was hoping to feel much better after!!! Don’t know how I can handle this much longer hope all is better soon cb

[Bobbi]

#1064649

Cynthia — Being hyperthyroid is horrid, there’s no other way to express it. But the treatments DO work to get our thyroid levels under control, and our bodies can heal once that happens. You are relatively new to the whole process, so right now all you can see is how sick this has made you. I truly do understand. I could not believe how ill I was at that point in time. And other people, like friends and family members — even some people in the medical professions — have little or no empathy for that. We don’t always "look" sick when we are feeling our sickest. It WILL get better, but you do need to work with the process. And, unfortunately, it is a process. The medications don’t work overnight to get things under control, and even once things are under control, it takes time for the body to heal. But keep your focus on the fact that your body can heal. You have already passed the first, major hurtle we all face with this disease and that is getting diagnosed. For many of us diagnosis is not as simple and as prompt as it should be. But once we are diagnosed, and on treatment, things start to get better, little by little.

Part of of our healing process requires working to regain strength. I mentioned my trip into the hospital gym, and the results of their evaluation, as a way of demonstrating why we need to be wise about our activities as we heal. If I had gone immediately into trying to jog, or power walk, I would have pulled muscles and set my recovery back, and gotten mightily discouraged. I needed to build my muscles up a bit more slowly than my mind would have liked. But by going about things methodically and carefully, I regained my strength and my ability to do what I want to do.

Try to focus on progress — even little tiny bits of progress. Jake long ago wrote a post to this board that helped me a lot. He comes from a native American background, and he chose to compare all of us to warriors. Not victims, warriors. Graves warriors. That was a really helpful idea to plant in my head. I immediately imagined myself as a Valkyrie, wearing a horned helmet and wielding a large ugly sword, and taking constant swipes at the disease — while I was lifting my paperback books as weights. ” title=”Wink” /> Silly, perhaps. But it got me moving again.

[MyTAnswers1]

#1064650

Good Afternoon and thank you to those who replied to my post. I liked being referred to as a Warrior. Right now I feel like a whiner. The weakness in my legs just represents how weak my body is and how much I have slowed down. I am 62 and have had both knees replaced. I often wonder if the stress from the last knee replacement was what triggered the Graves Disease again. Anyway, I wonder where else I could ask about the leg/muscle weakness.
Hang in there Cynthia. You are not alone.
Thanks, again.

[MyTAnswers1]

#1064651

Me again. I just re-read the replies and I am wondering Bobbi if you were working when you were recovering and going to the gym. I ask because right now all (and I do mean all) that I can do is work and do just enough around home to keep the day-to-day necessities done. I don’t have energy for much of anything more and when I do try something extra, it takes me days to recover. I am working a 40-hour/week job and am beginning to think maybe I need to cut the hours. I really appreciate your sharing your details of recovery. That is encouragement for me.

Cynthia — when is your surgery? I hope all goes well. I can relate to the frustration and how emotionally draining this can be. It sure is a lesson in acceptance and patience.

[cynthia]

#1064652

I cannot expres how much you all help me I don’t really have anyone who understand what is going on with me!!!! even though I hae 2 RN daughters they don’t really seem to grasp what my life has become if I didn’t have my 4 grandsons who I see almost ever day especially my littlest 2 1/2 year old who hugs me and kisses me especially when we watch barny for hours ha ha anyway I feel very alone and really need this I look forward to getting on the web site ever morning and reading new posts I seem also to be a whinner ugh!!!! anyway can’t say enough about you all !!!! my dr. apt with surgion is on aug 3rd and I feel like it is my birthday ha ha anyway will pressure him to do surgery quickily I know now that will not be a quick fix but am really looking forward to getting off the meds. think they are making me feel poorily also am thinking about your suggestions about easy exercize and soon as the kids go to school ( next friday) will try water exercize at the YMCA can take easy and water feels so good also wil request refferal to physical therpy asking for someone knowledgeable about recovery from graves…..how does that sound????also have 2 bikes one 3 wheel and one 2 wheel will try slow short trips on those…..hopefully this will help the one thing I really am looking forward to is the winter last year I was so cold it was hell and I didn’t know why????? it turns out my graves undiagnosed was causing cold interance weird huh???? thinking of all and hoping we get feeling better soon cb

[Bobbi]

#1064653

No, MyTAnswers1, I was not working while I was recovering from Graves. I was able to dedicate time to going to the gym three days a week, once I was cleared for exercise. But I did have teenagers living at home (not as much work, perhaps as little ones, but still requiring energy), and the job of running the house, so I do understand being worn out from things you need to get done. But I did have "flex time." However, one of the liberating aspects of deciding I was a Warrior, was that I sat myself down to figure out what was "necessary" and what was not, when it came to demands on my time and energy. Anything that was not absolutely necessary got eliminated somehow. I found it constructive to ask myself: If (my best friend in the world) felt the way I do, would I recommend to her that she do X? If the answer (as was typical) was "Are you NUTS?!?" then I would find a way to eliminate it, temporarily from my list of "to dos." Sometimes I just eliminated; sometimes I hired/farmed it out; sometimes the dinner came ready made from the deli section of the local grocery store; paper plates which can be thrown out, rather than being washed;

This situation you find yourself in, MyTAnswers1 is temporary. And you may still need to cut yourself some slack. But it will be gone sooner if you can figure out how best to work with the recovery process to improve your strength and stamina. "Exercise" doesn’t have to mean hour-long stretches of muscle "WORK!" It can mean a slow walk around the block after dinner (with the dishes still sitting in the sink). Baby steps. My one guideline with resuming exercise was that I needed to feel a bit better afterwards, not worn out. It takes time, but you can get there.

Wishing you good days soon.

[cynthia]

#1064654

thanks for support just wanted to tell all about a very strange effect I am having for years I had this bothersome habit of humming all the time it really got on peoples nervers but i couldn’t stop really thought I was nuts but quess what I don’t humm any more isn’t that weird if this was from graves have been ill much longer than I thought maybe as much as 10 years no wonder I am having such a bad time just thought I would mention it I also had the finger taping which my endo told me was frequentily done with graves this disease is very weird!!!!! hope all are better cb

[Pauly]

#1064655

Just wanted to say hang in there. You will get better. I have been living with Graves for about 13 years. It is a long path to recovery, but you will feel better. Talk to your Endo. I know they are always in a hurry but you really have to let them know how you feel. Keep your chin up and be strong. It took me 7 years to get leveled out, and there is still the occasional Synthroid adjustment. I also fight the aches and pains daily too. Taking vitamin D per my Endo, has made a huge difference in how I feel physically and emotionally. Best of luck and don’t let this disease beat you!

[Kimberly]

#1064656

MyTAnswers1 – The decision as to whether to cut work hours is a tough one. I went through this in 2007, as I was completely wiped out when I first started on Methimazole. It was all I could do to get through the workday. I seriously considered cutting back to part-time, but ended up sticking it out…and I started feeling better after about 10 weeks. That turned out to be fortunate, as I was laid off in 2009, so it was nice to have those couple of years without having to take a pay cut.

If money isn’t an issue, any extra time that you can spend working to improve your physical and mental well-being is a good thing. However, if money *is* an issue, this is a tough call with the economy still in the dumps. When I was considering my options, I was told that when it comes to layoffs, a part-time person could potentially be viewed as more "expendable" than a full-time employee. (Although I got laid off as a full time employee, so I’m not sure whether or not that is true. ” title=”Wink” /> ) You might consider approaching your employer about working from home one or two days a week, if that is an option in your occupation.

Best of luck!

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