Exercize with MG and Fibromyalgia
 

i was diagnosed with MG in 01. i have double vision, muscle weakness in extremities hips throat, neck shoulders, and face.sometimes my tongue feels like it weighs 10 lbs. i recently was sent to a rheumatologist by my PCP as he thought i may have Lupus also. i was diagnosed with polymyalgia rheumatica a year a go. i am also insulin dependent. i am over weight and have lost weight, but gained it back especially when on prednisone. i struggle with this constantly. the rheumatologist basically told me to get a lap band. He went on to say if there are problems eith the anesthesia to get it with a local. My PCP had never considered it before because of the complications with anesthesia. He also stated that I had no choice but to get it and it it killed me it wuld not be a big loss as i do not have a good quality of life. i went to see a bariatric surgeon and he kis reluctant to do it without much thought and consultation. he told me to try and find someone who has MG and has had the lap band surgery. I was also diagnosed with fibromyalgia two months ago. i need to to do 20 minutes of aerobic exercise to help with that. i am having difficulty with due to repetitive movements. does anyone have anything to offer here. i am willing to do what i need to do. the exercise is very painful, but i try to do it. i have much trouble breathing sometimes after the exercise and i have not gotten to 20 minutes and have been at this for 6 weeks. i would appreciate any input.
kater

Hi Kater
 

On the MGA forum here in the Uk a lady called Bea had the surgery done due to bone loss in her knee due to the steroids.

It maybe worth taking a look on their forum as some members post their email address on their profiles. You wont have access to this unless you have joined. She hasn't been on the forum for a while, but Im sure if you could contact her she would be able to discuss what procedure she had.

I hope this helps
Love
Rach

just had a quick look and its on page 7 of the forum titled "gastric band" if you look further back theres a few more bits about it.

Rach

First I can't believe a Dr told you if you died it won't matter because you have a poor quality of life anyway! He should be removed from practice!

Having MG and Fibro is hard, I know but I don't take Prednisone do to my super sensitivity to it but when I was on it I too gained a lot of weight {as everyone does}

As for exersise, it is hard but as long as you do a few minutes every few hours that would be better than nothing at all. I will sit and lift small weights until my arms start getting weak and I know I won't have to do anything for awhile. I sort of just fit in exersise when I can and it isn't a lot but like I said it is better than nothing.

As for the lap-band, I just don't know enough about it to give any advice but I hope someone can help you. :hug:

Hi Kater...and Welcome!

First thing I think I would do is find some new docs - - definitely get rid of the rheumy!!

Is it possible that you and your pcp should have an conversation about a coordinated, comprehensive approach to your body's health? It always concerns me when the number of specialists increases and each has an idea (perhaps valid, but perhaps also only from the perspective of their specialty). Maybe even a second opinion from another pcp. And probably a consult with a different rheumy.

RE: bariatric surgery:
I really question this procedure for the healthy - - let alone for some one with your history - and am glad the bariatric surgeon expressed such reserve.

These are just my opinions...and really don't count for much. Ultimately, only you (with guidance provided by docs that you trust) can make these major decisions about your health and quality of life.

Sue

I would get rid of that dr!:mad:

Sorry you are having that kind of stress on top of your illness. I would see a dietician if you haven't already. They can put you on a diet to fit your lifestyle and even without much exercise you will lose weight. A huge huge part of weightloss is the food we eat, modifying your diet, which isn't easy but can be done.

Hi Kater and welcome to the neighborhood!

If the bariatric surgeon is reluctant...I would pay very close attention to that. He's the specialist in that area, not the PCP or the Reumy. Unless we took it (your statement) out of context, I can't believe your doctor told you that without bariatric = no quality of life = death. Geez....where's there breath...there's life...and it's precious.....and let's don't forget....HOPE...

I agree with Atlanta, maybe you can find a dietician or nutricion in your area that can help you on a personal level. You need someone who knows how to tackle this situation head on with your health condition and exercise. It sounds like you are already doing some exercise and you sound like a very determined person. You can do it!

Check with your hospital's staff and talk with the dietician there. That may be a good source of direction for you.

My sister had the same surgery...The surgery does not mean you weight problems are over. She is slowly putting her weight back on and it's because she has some health problems and can't get the activity that she once could do. This is a major decision and I would not base it on just the careless words of your PCP only.

Keep on "keeping on" and stay in there with the exercise. A little activity is better than no activity.

Hope you Have a blessed day.
JJ

Hi hun, first your pcp making that statement is totally off base. Report him to the medical association in your state!! IMMEDIATELY!! And get someone who is compassionate and caring or can at least pretend to be when you are there. sigh. These are the knuckle heads who give docs a bad rap!! SIGH!! Understand that he is not the norm!! Most of us have great caring docs. My doc gives me a hug every visit. When something comes up, he says, we'll work thru this together. I am here with ya!!
Let me tell you what I know about lap bands from a semi personal list of experiences. My mother in law was toying with lap band surgery as she has battled her wt all her life. Up to high, looses it (usually some drastic diet) gained it all back and then some. Well she had her lap band done. First issue for some reason she can't loose anymore wt. Hasnt in 4 months. HMMMMMM. The second issue, she has been seen to be eating what she wants then going outside to toss her cookies, and comes back sits down and eats more. Can you say bulemic??
Ok now she has a male friend, short heavy set man. He has been his current weight for at least the 23 years I have known him. He decided that if she could do it he would too. He hates his. He is not losing wt. Can't enjoy his food at all. REgrets ever having gone thru it all.
Another friend of hers, another overwt person, woman this time. She to is failing to see big results and the constant stress of what to eat when and all the other medication/vitamin issues has caused her to also regret the decision.
NOTE: all of these folks aside from the obesity are healthy. No other medical issues exist for them.
And I too must agree with the other poster, if THE docs who do this to make a living are not comfy with doing it------------that is a pretty good indicator that it shouldn't be done. You are going to be able to find someone who will do it make no mistake. BUT you have a very loud and bright red flag already on the field here with the first doc wanting to run the other way.
I know it is not easy to make these choices. It never is. The best we can do is to listen to the opinions/advice out there. Get all the facts.....listen to your gut talk to ALL your docs and then make a choice.
Exercise for MGers can be difficult. And with one dx that exercise helps and one it will worsen for some it can be daunting. But know what..........there are ways around it. Take a step backwards. Start out with some chair exercises programs. I have a few that are just that. And listen to your body!! IF it says time out, then time out it is. You can split it up over the day. You may even consider seeing a physiatrist (doctor of physical therapy) he/she can help you set up a program that works for the MG and the other issues. And you progress in PT with increased reps so as you get stronger do more, weaker days do less. Not to say be a whimp, we have to push......but only to a point otherwise we get waylayed by the mg and can't do anything for days/weeks.
hugs

HUGS

HI Kater,

wow what a heartless doctor!!
I agree with what everyone else has said.
I found that my physio was the best person when it came to helping me out with exercise, she was very understanding and helpful.
I love getting in the pool, its soooo relaxing and I walk and swim to help exercise. But I do know that swimming can be bad for some people, and I started doing it after I had been doing a bit of walking firstly.
I think also you have to have your mg under reasonable control before you start thinking about any serious exercise, otherwise you are defeating the purpose.
Hope I have made sense and havn't made an idiot of myself
take care
Kate

Kater, I agree with everyone else on what this man said. EVERYONE, no matter what stage of life they are in, deserves to have the very best health care. And no one, especially not a doctor, has the right to decide if your life has quality or not. I also agree that this is malpractice.

Before you exercise with MG, you have to be stable. This is what every MG expert I have had or heard speak has said. Then it's like what Deb said, little bits at a time. Working up to what you can handle.

I use one of those rubber band things, sit on the edge of my bed and do arm exercises. I do arm exercises about 6 - 10 at a time, three times. I do not do those three times in a row. I alternate types of muscle groups so that they all have a chance to rest. There's no rush in doing them!!! You can do them slower than you may be used to. And I try to do this a couple times a day, depending on how I'm doing.

I also "suck in" my tummy, which a physical therapist showed me how to do correctly. It has slower progress but it is progress. I can see the difference. There's also a butt "squeezing" exercise you can do while sitting down. ;)

It might be worthwhile, like these guys said, to not only see a nutritionist but to see a physical therapist too. That way, you have people helping you out, supporting you in making goals without putting yourself into a crisis.

Having a fan blowing on you while you do anything will help keep you cooled off too, since heat is bad for MG. And maybe try to do things earlier in the day when you have more energy.

Since you may have lupus too, you have to be doubly careful about doing too much. Make sure you drink plenty of fluids too. You may want to contact your local lupus foundation to ask if they know of a rheumatologist who isn't such an incredible jerk.

There are ways to lose weight on Pred. Cutting carbs really works. Eating more nuts/seeds. Eating whole foods. Smaller meals, etc.

The lap band certainly does not come without problems. And I doubt it will really do anything to help you in the long run. Just eat smaller portions - that's about what that amounts to anyway.

I hope you can figure out something that works for you. It's not easy exercising with MG. And inflammation tends to kick up after exercising too so make sure you cool down. Best of luck.

Annie

ty so much for this information. i appreciate very much that you took the time to answer me.

thank you for taking time to reply and i appreciate very much the info.

ty so much. i appreciate your input.

ty so much for your input. i appreciate it very much.

ty for ur input and encouragement!

ty so much for the input. it is great. i also appreciate the encouragement.

ty so much for the input and info. i appreciate it very much and i have already looked into waer aerobics here.

Hi Kater,

just be aware that water aerobics can be very exhausting for us mg'ers!!! Remember to take it slow, especially if you have to drive home, better still if you can get someone to take you even better.
I really do love the water, I wish I had a pool in my back yard, still the public one is only 5minutes away. good luck
kate

I know that this is an old post, and I hope that Kater is doing well, but I just wanted to share how sickened I am with what that rheumatologist said- how heartless, and criminal to decide what life is worth living--God!:mad:

I've wanted to get back into swimming which I used to do a lot before I started getting really sick. I stopped because of the arm weakness and the feeling that my limbs weighed a ton afterwards, but I've never attempted it while being on mestinon...

I'm excited about exercising...I started doing some yoga poses which are really hard (not sure if it's the MG, being really outta shape, yoga's just flat-out harder than it seems, or all!), but my legs do feel stronger and I think that it's helping my back pain...The hardest part is exercising my arms...I used to be able to do like 30-push ups, no joke, now I'm afraid to try even two because my arms are really weak plus the sternotomy (I don't think that the bone has completely healed due to the prednisone).

Let's just say that my sterum isn't completely healed, do you think it's safe to try push-ups in light of this (if it were true, which I can't tell)?

What exercises do you all do? I often wonder what is 'MG tolerance' and normal tolerance...I've started doing jumping jacks, and get winded pretty early on...There was a point a long time ago when i could do 200, but I can only do about 30 now....It's prolly the MG and being really outta shape combo..

exercize and MG and fibromyalgia
 

Nicky,
I totally agree that the Dr. who said this must not have a heart. It makes me angry to think that ANYONE, let alone a Dr. thinks they have the right to decide who has a quality of life and who doesn't!!!

I basicly just walk for exercise but have been thinking about trying yoga myself. It's been too cold to walk outdoors.I've heard great things about it. I think you are right about it being a combo of things making it difficult. I have noticed my tolerance for exercise isn't what it used to be either. I think if you have any doubt that your sternum is completely healed you shouldn't do any push ups. Maybe you could use light hand weights and just do some toning/strengthening for now. Keep me posted on how the yoga goes after you get used to it. I have never done yoga before but have it on demand through my cable company. I need to give it a shot one of these days soon.
Sounds like you're doing pretty good. How is it going tapering down on your Pred? I saw my neuro today and he is ready to start tapering mine down. One one hand I am thrilled but on the other I'm scared. He said it is time and if I start back sliding we will have to start another type of immunosuppressant. I am battling bronchitis and a sinus infection right now so he told me not to start tapering until I am completely over that. Hopefully my sleep and eating habits will straighten out again soon!!!
Kendra

I would like to try yoga, I think it would help with my stress, too.

I have found that I can do lots of strength exercises without getting too tired but I can't do aerobic activity that gets my heart rate up. Anything that makes me breath fast makes me lose muscle strength and get so tired I just can't do it and then I have to rest for a long time.

I have been outside working (shoveling, trimming, even carrying heavy things..basically gardening) and it is working out great for me. The only thing I have trouble with for some reason is bending/kneeling down...I have a hard time getting up!

One factor that might make it easier for me to do strengthening activities is that I have always been very strong.

I do miss running, I love to run but it makes me so tired very fast.

I do wonder if this is typical of MG or if it is just me.

I know exactly what you mean about bending and kneeling...I look like a toddler getting up sometimes!


Running is not an option for me - - but twice this week I took the dog for a walk in a meadow near the house. Found out really fast that walking in meadow is much more difficult than pavement. Lifting my legs to 'clear' the uneven ground was fine for a bit - then I felt like the weights got strapped on. I slowed the pace, but once I began to notice the shallow breaths; I stopped to 'enjoy' the scenery.

It took a lot longer to get home than it did to walk out!! I keep hoping that if I do a little more and then a little more, I can work up to a decent long walk like Jana was talking about in another thread. (Even though neuro has said that this is not a 'conditioning' kind of thing. Somedays you'll be fine - - others not so fine.)

I used to be very athletic and strong - now not so much. I do miss many things - but am glad for what I can do. I think the most difficult thing for me is that I can not do as many activities in a day as before. I used to be on the go ALL the time - and now, I can try for either this or that (but not both) in the same day.

Sue