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Polymyositis/Scleroderma overlap


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#1 ladyhawke

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Posted 20 February 2009 - 11:01 AM

I was first diagnosed with polymyositis and then with scleroderma. Have had many many tests, had water removed from around my heart. Did the wheelchair/walker/cane thing. It's been 2 1/2 years now and I'm doing much much better. I started with 16 pills a day of prednisone, and 3 of Imuran. Am off the prednisone as of last month now. Still on the Imuran. I take lots of calcium and vitamin D. I am so much better than I was, but I know I can't go back to work. I feel very weak and get fatigued easily. When I get tired, I feel it in every muscle in my body. I even have trouble forming my words because of facial muscles. My voice changes after I eat, my throat muscles even get fatigued.

When I do something that is strenuous, I still have some incontinence. My elbows are sore to touch. I could go on and on. I tried a personal trainer and actually seem to be getting worse. I saw a chiropractor today who is into something more than chiropractic stuff and he feels he can help me quite a bit. My upper body strength is much worse than my lower body strength. Anyway, my question is if there's anyone else with both of these diseases, what kind of exercises do you do, how often, for how long etc.?

Also anything else you can talk about would be great. My rheumatologist says he has never had anyone with both of these diseases and he just doesn't know if it will get better, worse or if this is it. He suggested cardio for exercise. He said that having both of these diseases is better than having one of them because you don't get the full blown effects when you have both. My job is a factory job, I'm a tire builder for a tire plant. It's 12 hours rapid rotation shifts. Nights are difficult when you are healthy. I have to make a decision soon as to whether or not I can go back. I've never been sick in my life until this hit. I keep thinking it's going to go away, you know, you get sick, you get better and then you go on. I guess the hard part is coming to the realization that this might just be "it". Anyway, comments, anyone?

Thanks so much,

Lisa
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#2 Jeannie McClelland

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Posted 20 February 2009 - 11:51 AM

Hi Lisa,

I've only got systemic sclerosis, so I can't speak to the polymyositis.

Have you looked at the page we have on Myositis? One thing it says is "Once myositis is diagnosed, its very important to quit exercising, since repeated use of muscles will worsen the inflammation."

That might explain why you felt worse after starting an exercise program with a personal trainer~ :(

It's recommended that, at the doctor's discretion, repeated blood tests are done to monitor the level of inflammation and response to treatment. Maybe if you have a good response to treatment, you might be able to resume exercise, under qualified medical supervision.

Have you talked to your doctor about going back to work? He might be able/willing to guide you in making a decision. Your job sounds like very hard work~

Big hugs,
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#3 ladyhawke

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Posted 20 February 2009 - 12:26 PM

Hi Jeannie, thanks for your reply. I did see that quote but I thought that it meant when myositis is "first" diagnosed. I'm not sure what is the polymyositis and what is the scleroderma and what is just getting older, etc. I'm 52.

My rheumatologist just suggested cardio for exercise, and he also tells me that he simply doesn't know because he has no other patients like me. I guess I just feel like I have to get some muscle back now that I'm back on my feet again. I'm afraid I'll turn to mush if I don't do something. Doesn't there come a point where you get to be normal again?

I don't know about the blood work for the scleroderma, but I know that for the polymyositis, my CK levels are back to normal. I know that I couldn't do the job as I feel right now, but if I could get going in the right direction and get some strength back, then maybe I could? I don't know, maybe I'm having "acceptance issues" here. :lol:

This chiropractor that I just started with today, said not to do any exercises at all. I went for x-rays and see him again on Monday. He says I need to start over and start very very slow. The personal trainer wasn't such a good idea. Apparently he has some sort of thing that hooks up to you and a computer, and you move your arms, legs etc. and it can tell you what muscles are working and how much they are working. Then he can design a program specifically to your needs. I'm curious if anyone else with these two diseases has tried anything or has any comments on what experiences they have had.

Thanks again Jeannie,

Lisa
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#4 Jeannie McClelland

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Posted 20 February 2009 - 12:55 PM

Hmmmm, I've been to a physiotherapist that used one of those machines you described. Interesting device.

I'm not a doctor, or even qualified to administer a bandage, but my personal philosophy is to "exercise to tolerance." So I do stretches every day, strengthening exercises most days, but subject to how I feel on those.

There is such a thing as deconditioning, which occurs when you are inactive for any length of time, or a particular muscle group is immobilized (a broken leg in plaster, for instance). It's not a one-to-one ratio either. A nurse friend told me the rule of thumb is for each immobile day, figure on 7 days of "rehab" to get back to the level of conditioning one had before ceasing to exercise.

One piece of advice everyone seems to give is to start slowly - none of this "go for the burn" nonsense. (Your chiropractor has it right.) Ramping up one's exercise levels can be accomplished 3 ways: repetitions, duration, or speed. So what's wrong with one rep today, two tomorrow, and so on? I have dogs that need walking and if it is a pretty day and I feel like going the distance, I cut way back on how fast I try to go. On the other hand, we have the occasional speed run: one block, as fast as I can go. (OK, that's not too fast and they're short blocks.) The other thing I practice is to rest before I get tired. Once I get a noticeable increase in pain/fatigue, it's too late.

I think the really crucial thing is to try and find somebody who knows more about polymyositis~ Easier said than done, I know, but a second consult might be in order.

Warm hugs,
Jeannie McClelland
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#5 janey

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Posted 20 February 2009 - 01:14 PM

Ladyhawke,

I was diagnosed with scleroderma/PM overlap 5.5 years ago. I really believe that the PM caused my loss of strength but both attributed to the fatigue that lead to exhaustion and loss of stamina. I was instructed by my rheumatologist not to start exercising again (except for gentle stretching and yoga) until my CK was normal. After a lot of ups and downs with my CK it finally became normal last summer and has stayed there. My new cardiologist put me on an exercise program last spring. Just like your chiro suggested - I started out VERY SLOW and progressed as my body began to handle more. In fact, when I started I could only do 10 minutes on the treadmill at 1.6 mph. By walking 3 days a week, I soon was able to increase my speed (by a little), but more importantly, my time. I'm now doing 50 minutes on the treadmill with a final speed of 2.6 mph! Of course I build up SLOWLY to that speed. My body tells when to increase it..

I go to a heart rehab center so my program is monitored. The cardiac techs and doctor stressed that time was more important than speed. I always know when I pushed too hard because my joints start hurting or my muscles are sore in the evening. In addition to the treadmill they also put me on a machine that is like a recumbent bike with arms involved. Instead of peddling you slide. (If that makes sense). It's a great machine to start on because it works all the muscles very gently. I would highly suggest it. I did add weight lifting a couple of months ago, but again - I'm doing VERY LIGHT weights and few repetitions.

It's best to work with medical personal on your exercise program rather than a personal trainer. I've used personal trainers in the past and the ones I've had seem to have treated everyone the same.
I hate to say this, but it's been a long road getting to this point, but seeing what I'm doing today and knowing what I couldn't do a year ago - it's amazing! I truly feel like I have a life now.

Hope this helps Darlin'.

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#6 barefut

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Posted 20 February 2009 - 04:57 PM

Hi Lady,

Good to see you post again. :)

Glad you posted this topic as I have been wondering the same. My rheumatologist keeps asking me about muscle weakness, which I have, but then she asks if I think it's weakness from pain or just weakness. Well, there is always pain there so it's hard for me to say. I think she may suspect or at least is looking out for PM with me. The more I learn from listening to you and others describe your situation, the more I suspect it in myself.

I started walking on my lunch break today and my legs felt like concrete and my feet and calves cramp. It only got harder, not easier. So I worry...

I am thinking about joining a weight gym and working on building some strength in my legs and knees. Have you tried weights? If so, how did it work for you?

#7 Purr

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Posted 21 February 2009 - 08:07 AM

Hi Lady!

I was first diagnosed with Lupus, then scleroderma, and then polymyositis. That was in July of '07. My rheumatologist put me on methotrexate right away for the sclero and then increased it when the bloodwork showed PM and it has done wonders. I have been giving myself an injection of 1cc (25 mg) of MT for about 14 months. Before that I was taking it in pill form. I also take prednisone and am down to 7 1/2 mg a day. From what you say, your polymyositis is much worse than mine ever was. I had alot of trouble lifting, bending, turning the steering wheel when driving, reaching up, and going up stairs. I bought a cane, but haven't had to use it yet. The MT doesn't work for everyone and some can't tolerate the side effects. For me the side effects (mild headache and mild nausea) went away after taking it for a short while. Also, if taken by injection, it bypasses the stomach and shouldn't cause nausea.

My rheumatologist said the same thing to me about having more than one autoimmune disease. You don't get the full blown effects. So there is a good side to everything.

What Janey and the others said about walking is absolutely true. The treadmill and exercise bike help alot. I also bought some 3 lb weights to strengthen my arm and shoulder muscles. My problem is making myself do it. I need to work on that!! :P

Christy
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#8 ladyhawke

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Posted 22 February 2009 - 08:52 AM

Thanks to all of you who replied. I see this chiropractor tomorrow and am very interested to see what he has to offer. There doesn't seem to be anyone who "knows" either of these diseases let alone anything about overlap diseases here. I don't see many on Imuran which I am on (3 a day for a total of 150mg's). I've quit doing the excersises now until I see this guy tomorrow. When I was doing them, I could only do 3lb hand weights, and for most of them I just used the rubber bands. I now feel worse than I did when I first started with the trainer. Mostly my upper body just feels like the muscles are "pulling", it's had to explain, like I feel like the muscles in my neck and shoulders are pulling my body forward. I wish there was someone out there who could just say....well, you have sclero and pm....so you need to do this and this. Instead everyone including myself and you all as well are more or less guessing and hoping that it's the right thing. I thought because my muscles are so weak that I needed strength training, now I think that wasn't such a good idea. Sorry I took so long to post back here. I didn't get any notices that anyone had replied so I just now came to check and sure enough here you all were. Barefut....be careful of your knees, I have found using the rubber bands about the best, it makes it easier and a more fluent movement. I also use the big and small excersize balls. I find I can do things like squats with them as I can't without them. You put the big ball at the small of your back, against a wall with your feet out, then just squat and the ball rolls with you down the wall. I'd never be able to do these without it. So many neat things out there now to help. I'll let you all know how it goes tomorrow and what he suggests. Thanks again everyone! - Lisa
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#9 Amanda Thorpe

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Posted 22 February 2009 - 11:41 AM

Hello Ladyhawke

I have sclero and know nothing about PM so won't be able to help you there. I did just want to say that not exercising right now may be the best thing you can do.

When I was becoming ill with sclero and obviously didn't know it I continued to exercise. This is despite being in real pain, picture it, no mobility in the ankles yet still climbing onto the cross trainer...dumb, dumb,dumb. I figured that although only doing 20 minutes slowly, previously did 45 fast, would be helpful, what I was trying to do was have some sort of control over my body but in reality I had none.

It turned out to be the worse thing I could have done because I ended up with fasciitis which is an inflammation of the fascia and can be caused by over-exercise. My body was in pain, losing mobility and stamina and yet I insisted on exercising thinking a little was better than none -- wrong -- it should have been none!

I understand the want to exercise, all I can say is for me I should have listened to my body and stopped much sooner. I know I will start again some time in the future but for now it's not an option.

I hope this helps.

Amanda
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#10 TJ903

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Posted 23 February 2009 - 03:12 AM

I've just been diagnosed with polymyositis (PM) and have systemic sclero. It is great to see all of this information, esp. the problems with speaking. I go the the physical therapist (PT) this week for evaluation and hope she is knowledgeable.

Sorry to hear that you are suffering with both, it makes it doubly hard to get a work out that isn't too hard on the heart (I have problems there as well.)

Will follow this post; great inforomation to take to my doctor.

#11 Peggy

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Posted 24 February 2009 - 01:14 PM

I too have sclero and polymyositis and peripheral neuropathy, along with Sjogren's and Raynaud's. I was just told by the pulmonolgist to get out a little and exercise some. She said this though without knowing that I also have polymyositis. I have extreme muscle pain in my legs and arms and I'm concerned that exercising is just going to make this worse. As it is now if I do too much physical activity I really pay for it the next day in the degree of the muscle pain. I wear a pain patch and also take powerful pain meds for the pain and the thought of adding exercise to it and make this worse doesn't really appeal to me. I really don't know what to do so I'll just start out by taking walks, short ones at first.

Warm hugs,

Peggy

#12 Shelley Ensz

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Posted 24 February 2009 - 02:08 PM

Hi Peggy,

I may be wrong (I often am!) but I think you'll need your rheumatologist's approval before beginning any exercise program, since you have polymyositis. They need to check CK levels and such, to make sure it is safe. And even when it is safe, it should be a medically supervised program that begins at a very low level and very gradually increases -- nothing like the good ol' days when you could launch into a new fitness program willynilly.
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#13 ladyhawke

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Posted 24 February 2009 - 04:17 PM

This has been so interesting hearing from all of you, thank you so much for continuing with this thread. Janey thanks for your info on the exercise that you are doing and the walking. I'm thinking of starting to walk as well. And was so good to hear of your progress! I go to my 3rd visit tomorrow to the chiropractor. He has this huge TENS machine ("TENS" is the acronym for Transcutaneous Electrical Nerve Stimulation) -- and says that depending on the frequency they use, they can induce the body to produce anti-inflammatory, cortisone etc. responses. He wants to do that for 4 or 5 days as well as minor manipulation (very minor) and then start some very low key (slow) exercises with rubber bands. My lower body strength is better than my upper body strength by far so I think the walking would do me good for the cardio part.

Barefut....let me know how you make out and if they do find poly, ok? If you do the walking and you feel like it's getting worse, I'd stop until you find out for sure. I think I did the wrong thing going to the personal trainer first. I feel like I got worse.

Christy: I know exactly what you mean by saying the problem is making yourself do it -- man, do I know that -- once I'm in there going at it, I'm OK, but trying to get myself there seems like the hardest part. And then when it's over, I don't know if I feel better or worse! I wondered about the methotrexate as I'm on imuran. Seems that here (Ontario Canada) they are leaning toward the imuran now for a few autoimmune diseases.

Amanda - I think you are right about the exercise. I think I should have listened to my body as well. I'm going to start again but this time with more experienced supervision and a whole lot slower.

TJ903 - I find when I get tired, my facial and throat muscles are very effected. It's like the muscles in my face won't allow me to form the words and I talk funny. My son thinks it sounds "cute" <sigh>. Also when I eat it's like the throat muscles get fatigued and even my voice changes.

Peggy - I wondered about pain killers. What is the pain patch that you mention? I haven't heard of that. I tried Ibuprofen but it didn't help much. Someone also mentioned muscle relaxers. Anyone got any comments on that?

Shelley - Thank you, I think you are right, we all need to be very careful with the exercise. If it hurts don't do it. It was mentioned somewhere not long ago that polymyositis is inflammation in the muscles and if you exercise, you are causing more inflammation.

Has anyone else had any experience with the TENS unit?

Thanks to all,

Lisa
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#14 Jeannie McClelland

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Posted 24 February 2009 - 05:02 PM

Hi Lisa,

My physio used a TENS machine while I was under her care and recommended a small, portable unit for use thereafter. The battery is rechargeable and slips into a case a little bigger than a deck of cards that contains the rest of the gubbins. I can wear it on my belt. The lead wires come out of adhesive patches that the electrodes are embedded in and plug into the little case. The battery lasts quite a long time before you need to recharge it and 2 of them were included with the unit. My doctor needed to write a prescription for me to get the unit.

We fairly recently published an article on TENS in our Pain Management section - it's the first article under Pain Treatments.

I get severe muscle spasm, mostly in my back and upper torso and the TENS does help relieve that pain. The only problem I have with it is that I've got a hefty sensitivity to the adhesive, so I have to severely limit how long I leave the electrode patches on. I use a skin prep before placing them and a surgical adhesive remover when I take them off. Well, I say 'I', but it's really the Handsome Hubby because I'm not double -jointed!

Gentle hugs,
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#15 ladyhawke

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Posted 25 February 2009 - 04:55 AM

Hi Jeannie,

I too have a TENS unit. Haven't used it in a long time so I dug it out. The chiropractor did tell me to bring it to him today and he will reprogram it for me. Apparently he has some special code or something..I don't know. Anyway, I have to take that to him and my back brace so he can show me how to properly fit it. It's just a lower back brace but should help straighten things up I guess. I've been lucky that I actually don't have a back problem, but my neck is quite curved pushing my head forward and I'm getting "the hump". He says it's in a very early stage so can be corrected. I'm skeptical but he is very positive. They said they have another scleroderma patient who doesn't have the polymyositis. I don't know how she is doing, they didn't say. Anyway, we'll see how this goes. I think I'm to the point mentally where I'm not counting on anything but not counting anything out either. I think acceptance is the hardest thing to come to terms with. I've never ever been off work before for more than a week, you know, you get sick, you get better and you move on. Realizing that this just might be "it"...well, I don't have to tell you all, because you're there too. I'm very grateful to this group. Thanks again everyone! Any more comments are always welcome.

Lisa
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#16 Peggy

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Posted 25 February 2009 - 06:02 AM

Lisa - the pain patch that I wear is a prescription pain reliever. It comes in different doses. I started I think with 25mg. I'm now on 75mg. I wear it for 3 days and it administers pain relief 24/7. Sometimes I've had to up it to the 100mg but I hate doing that because I'm worried about building up a resistance to it. But the doctor said if that happens then I'll have to wear a 100mg and a 25mg both.

It's amazing but I live in a little town in Central Minnesota. My local doctor has 2 other patients that also have systemic sclero and suffer like I do with pain. One of them even has home health coming in on a regular basis. I plan on the next time I go in and see him to ask a little more about them.

My local doctor is the one who is taking care of the pain portion of my disease due to my sclero doctor being 3 1/2 hours away. It's easier to give a local call out if the pain really gets bad and he's on top of what's going on with regard to that.

With that though when I went into the ER three weeks ago to have an IV for pain as it was just getting to be too much, he tried to give me a stronger pain medication and I'm allergic to it. Thank heavens I asked what was in the IV before they gave it to me! As it is he gave me another new drug and I had a terrible reaction to that one. I have more drug allergies than I have ever had and I think it's because of the disease. From now on I will be extremely cautious before I EVER let them give me a new drug to make sure it's not in the same drug family as the drugs I'm allergic to.

I won't be exercising either until I meet with the pulmonologist in May. When she told me to get out and exercise I know it's because she has no idea that I've been diagnosed with Polymyositis too. I will take little walks but that's about it.

Warm hugs,

Peggy

#17 debonair susie

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Posted 25 February 2009 - 11:32 AM

Peggy,

You and Shelley each spoke to the exercise regimen.

With our health issues, it's really important to clear these types of things with the doctors who diagnose us, before we begin an exercise program on our own.

Trust me, Lisa...no harm, no foul, should your doctor approve exercise for you. However, it's important to get an exercise program that is just right for you.

As has been mentioned, we do know our limitations, but at the same time, we sure don't want to cause undue harm to ourselves, either.

Everyone has been great about posting their own unique circumstances. Thanks so much!
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