AnonymousMay 12, 2006 at 2:24 pm
Can someone explain to me what muscle atrophy feels like. I’ll explain what’s going on with me. From the beginning of CIDP, I had to become a side sleeper and I have to have a pillow between my legs because I get a strange/weird sensation when skin touches skin. The only way I can explain is that it’s as if there was no cushioning. About a month ago, that same feeling happened with my arms, but with the arms, a pillow doesn’t help (I tried a side-sleeper pillow). Even with a pillow between my arms, I still feel that pressing. I also get cramps in my legs at night which eases up if I flex them.
Okay, this is where I need a COACHING squad to yell at me because I am a very very poor self-motivator (I need Ty with that bull-horn)! I am no longer progressing, I am in a recovery and EXERCISE is extremely important to rebuild muscle strength in order for more improvements. I have not gotten myself in a exercise program since March:eek: and I think muscle atrophy has started.
I do intend to go back to physical therapy, but don’t know what to do about a prescription. I actually have no neurologist now and if my family doctor was willing to write one, I don’t know if he’d do it (recently changed to a new family doctor) because he’s only seen me once.
AnonymousMay 12, 2006 at 4:41 pm
Muscle Atrophy doesn’t feel like much of anything. You can tell it’s happening due to weekness and you can actually see muscles getting smaller. You could use a tape measure to see small amounts of muscle atrophy. Generally moving around and doing chores is enough to prevent atrophy. Atrophy can set in in just a matter of a day or two if there is no muscle movement.
Liz, it is real important for your health to get at least some exercise. I care about you so this is why I am telling you this. The best exercise is exercise you actually do. It doesn’t matter what it is, find anything that you enjoy doing that keeps you active. It could be walking, birdwatching, water aerobics, Tai Chi, Yoga, full contact sewing circles, or touch football. Just keep your muscles moving.
AnonymousMay 12, 2006 at 5:04 pm
I am concerned about muscle atrophy, too. Problem is that my symptoms at this point are progressing – no end in sight – and any kind of activity is getting more and more difficult. Exercise is not an option for me but I am still trying to stay active. Sometimes I scare Carol when I am huffing and puffing making it down to the basement holding on to the railing for dear life – like a short while ago to change the program of our sprinkler system. Carol is always changing something outside – new bushes or such – requiring me to react since she claims not to know how to do it.
Here some suggestions for your exercise.
AnonymousMay 12, 2006 at 8:55 pm
liz, i have muscle atrophy on my rightside. first started after a knee surgery in 04, lost 2 inches above my knee. my right arm is in the process now, just below the shoulder and below the elbow. my leg was measured by my then pt, i noticed my arm about a month ago. have been having alot of problems with the arm since 05 and now i have a bicep without flexing my muscles. i actually can’t flex my muscle on demand-like popeye. been told i probably won’t get my muscle mass back, even with exercise, but i still have my hopes and still try to do some type of exercise type movements everyday. even if its just reaching for a can off the shelf or picking up something off the floor. i know what you mean about that weird feeling when leg touches leg or with the arms, it gets really annoying at night when you can’t get comfy. take it easy.
AnonymousMay 12, 2006 at 10:31 pm
I have been wondering the same things. I have also become a side sleeper for about the last 3 months. I don’t use a pillow yet, but I do use flannel to sleep in. I have lots of flannel pants and tops along with my bed sheets. I find these to be more soothing on my skin. It has just started bothering me, fabric on my skin, so I may not say the same thing next month, but it helps me for now.
Does anyone know if contractures are the first stage of atropy? I have contractures in both knees, I am feeling the same in my hips and the last few weeks it has begun to feel similar in my shoulders. I do know that my shoulders are rapidly loosing the range of motion. A week ago, I could scratch my back still, and hook things that needed to be hooked, but I can not do that now. So is this the beginning?
I have not taken any measurements of my limbs, but my lower legs look smaller to me, and my upper legs, particularly my knees look funny. Kinda baggy skin. I asked the ortho but he said my knees look ok. I suppose they do, but not like they used to look.
Most recent, last few days, my thumbs are starting to feel the same. Tight, and painful.
I do have fluid on my knees confirmed by MRI, that should not be there. The doc does not know why and said he can offer a cortisone injection for the pain, but doubted it would help. I declined the injection, and he said he was so sorry, he did not know enough about CIDP to know if this was something that occurs with it or not, but he was not able to help me other then the injection.
AnonymousMay 12, 2006 at 10:36 pm
Also, like Norb, I continue to progress. We are preparing me now to begin PP and hopefully that will help. If not, we will start chemo. So distressing when everything they try, doesn’t work.
I am beginning to think that my doc may need to consider a cocktail of treatments or something. But for now, I am grateful he is finally going to at least try PP. Before he did not want to.
Also when you have muscle atrophy, does that show up as muscle destruction? I just had a CPK which checks for that and it was normal. Curious if they are related.
I posted late last night when I was tired, and I had the most exhausting day today so hope I am making sense.
AnonymousMay 13, 2006 at 12:56 am
It looks normal. However, might look wierd. Like my hands, my right index finger is halfway bent when I raise my R hand. A have restrictions in fine movements. However, my grips are strong and equal.My neuropathy is part of my life after GBS. I accepted that. So much so , that I accept my scar on my neck from tracheostomy. we all need to adjust and use whatever we can do.
AnonymousMay 13, 2006 at 9:22 am
I was experiencing weakness in my muscles and noticed that my calf muscles were reducing in size. I asked my internist if I could try some water therapy and I’m delighted that she replied positively. I go three times a week to a hospital rehab center and am considered to be at maintenance level – wide range of exercises but with limited repititions. I feel so energized from just being in the water.
Also, I am so glad that our Forum is back. I really missed all the info that we share.
AnonymousMay 13, 2006 at 10:25 am
I’m glad I posted this because it’s helping me now more then I first realized. My problem is probably just “lack of an exercise program” because I need more then just daily usage of arms and legs to rebuild strength.
This post is also helping in another way. My mother spends more time in bed now then when she gets up because of declining health and I fear that she may lose the strength to even get herself up.
AnonymousMay 13, 2006 at 10:29 am
Last day of walking & normal movements was April 26th, 2002. I woke up the next day unable to lift my arms, walk at all, & had lost the use of my hands. From then on it amazed me how fast I atrophied. When I was at Mayo in inpatient rehab the middle of May, they asked me if my lower legs had always been so skinny. Actually I was very athletic all of my life, skiing, skating, tennis, etc., but it didn’t matter, atrophy occurs rapidly.
I have now been doing extensive water aerobics twice a week for a year now, but I know that below the knee I will always be atrophied. But that’s OK, I have accepted that. But the water feels wonderful…
August 9, 2017 at 9:02 am
I have lost muscle mass in right quad and right triceps. Not sure if it is a result of GBS in March or use of statins since 2010. Can I rebuild it? What do you think? Neuro just ordered blood work:Rheumatoid Arthritis factor; Creatine Kinase (CK), MB Total; Protein Electro., S; Lyme IgG/IgM Ab;TSH;Vitamin B12;Antinuclear Antibodies Direct; Anti-dsDNA Antibodies.
August 10, 2017 at 5:27 pm
In a separate post I started a topic on fatigue. Perhaps fatigue and atrophy are linked. That same article states: “Patients experience fatigue already at the onset of GBS, and it can surprisingly persist for many years, even after total recovery of muscle weakness . Fatigue in GBS was sporadically reported in the literature until 1999, when a cross-sectional case control study showed that fatigue is an essential and incapacitating residual symptom in patients with immune-mediated polyneuropathies . Eighty percent of patients that recovered from GBS or CIDP or had ongoing CIDP suffered from severe fatigue.”
August 10, 2017 at 5:31 pm
Recall that every condition and every patient is different. Ask your doctor bout those muscle groups. Perhaps they can be tested. At any rate I found: “About 30 percent of those with Guillain-Barré still have a residual weakness after 3 years. About 3 percent may suffer a relapse of muscle weakness and tingling sensations many years after the initial attack.”
Best thing is to ask your doctor.
August 15, 2017 at 6:54 am
Interested in anyone having knee surgery. I saw a post on here, but not sure how I actually email that person. Please, I desperately need answers on any GBS PATIENTS that have been through this.
God bless and Thanks in advance!
August 15, 2017 at 8:49 pm
You might get some answers if you start your own topic in the Main Forum. Years ago ‘they’ used to let us contact each other. Apparently there were some bad apples causing trouble with other members and that feature was removed and is no longer available. As far as I know.
August 16, 2017 at 5:37 pm
jk, that feature was a part of a general-purpose software product that was used previously to support the forum. It was there simply because the software came with it. When the forum was reimplemented with the current software, private messaging was not included simply because it isn’t needed for the purposes of the forum. A few members thought it was important, but you can’t please everybody.
August 17, 2017 at 8:44 am
A full-contact sewing circle? Where’s the sign-up sheet?
Unless there are other circumstances that I didn’t read somewhere, a person should be able to recover from atrophy. I’ve done it twice: 15 years ago after shattering an ankle, and again 4 years ago with the GBS. I did it the second time while sitting in my wheelchair or in bed/on my couch while reading/etc… at first by grabbing a foot and “forcing” movement similar to standing toe raises/dips.
Also, from what I know, atrophy is not destruction, nor should it hurt unless the muscles are sore from regrowth. (I had Restless Legs Syndrome [from being an undernourished kid] and that hurt.)
Imagine the cartoons when a character swallows Alum and its head shrinks, but by the next scene he/she is back to normal. It was either Tom & Jerry or Elmer Fudd (Figaro, Figaro).
August 18, 2017 at 12:39 pm
Atrophy from lack of use is a different beast than Atrophy due to the muscle fibers not receiving any, or a poor, signal from the connecting nerve pathways. This atrophy, left untreated and uncovered becomes unrecoverable. Ask Jim-LA, myself, or any of the others with long term permanent loss of muscle atrophy.
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