Losing Muscle Tone

[k'smom]

Kay started physical therapy yesterday because the ortho said we had to build her muscles up in her shoulders. They pop out of place all the time. Yesterday, the physical therapist told me that her upper body muscles are basically turning to mush. I don't understand this. Even with all that she goes through, she still manages to stay pretty active. She pushes herself alot. We just found out she can only handle half a pound weight in her left hand, and a two pound weight in her right hand. They also discovered that her elbows are popping out too. Just two years ago, she could carry a 50lb. feed bad with no trouble. (She used to get fussed out for doing it though.) She still doesn't see the geneticist until the 25th, but now I'm starting to worry about "what" is causing the decline of the muscles. If it is EDS, does EDS do this kind of damage to the muscles?

[lieze]

I feel like especially my arms are shriveling up too.

I don't get it.

I have lost weight and I still have hips and fat that I can pinch but my arms are like sticks?

Do you think it's partially from inactivity?

I don't understand it exactly.

[juliegee]

Mack also pops too- like a champagne cork . He can (on command) make the loudest pops and crackles in all of his joints. He's dislocated his shoulders, neck, etc. He is NOT Dxed with EDS, rather an unknown connective tissue disorder. I could be wrong, but I don't think that there is anything intrinsic to EDS that manifests as a loss of muscle strength...

Are you sure it's muscle that she's losing? Most of dysautonomia is impaired neurons. Could it really be that her dysfunctioning nerves are making it look like she's lost muscle strength? Just a thought... The other thing I thought of is the "use it or lose it" adage. At the time she was lifting the heavy feed bags, I assume it was something she did regularly. Is she still regularly doing that? Or trying? It's really hard, but I think it's important to let our kids push themselves as much as they can. Sometimes parents get scared during the process of sorting this out & we shelter our kids (treat them like they are invalids) rather than encouraging them to do ALL that they can.

During the year that Mack was being diagnosed and a treatment plan was being hammered out; he began taking little walks every day to regain his strength. They were very short at first & he had to lean on me a lot. The walks eventually got longer and faster as time went on THEY were an instrumental part of his recovery. I think PT for Kay is great. Encourage her to do as much as she is capable of doing.

Does Kay have a DX yet? If not, I realize that it's hard to push her. Just encourage her to listen to her body to find her limitations. Pushing a little can help her reach a higher level of functioning.

Hugs-

Julie

[k'smom]

Hi Lieze,

She was less active for a couple of months. Mainly because her blackouts were getting so bad and she felt completely drained most of the time. I think it was around Thanksgiving when she really started to go downhill. But when they got her on Florinef and adjusted it to the right dosage for her, we really started seeing a difference. She was up and walking again. It took a few weeks to build her strength up again, and then last month she got the flu and was really sick for over a week. Other than that, she tries to stay pretty active. She loves to walk alot. Until November she played a lot of basketball with her cousins. But I remember after all her problems started about in Dec '09, she started walking different. Mainly with her shoulders pulled foreward, kinda hunched a bit. She quit swinging her arms when she walks also, and that was around the time her shoulders started popping out of place. At first it was painful for her, now she can just move her arms in certain ways and it just happens but is not painful anymore. Its just strange to me.

Hi Julie,

She was diagnosed in Dec with POTS. The ortho and the physical therapist told us its her muscles. I don't know how they know that for sure. Her knees and hips pop too, but when that happens, it hurts her. I basically let her do whatever the drs say is okay for her to do, but right now they have her at a 10 lb. limit on picking things up, no driving, no horseback riding, ect. I've definitely been through the "scared" phase! But after talking with her drs, realized the best thing I can do is let her carry on as close to normal as she can. It's very hard sometimes, since she's 16 now and dating. When she leaves the house I pretty much sit on pins and needles until she's home and then try to act like I wasn't worried a bit, lol.

[lieze]

Okay this is making sense to me now.

I used to lift people for a living.

Like K My better judgment told me I was too frail for such activity so I avoided it when I could.

I was not one to get out there and volunteer to lift people on and off a scale who could not stand or walk and some can't even bear weight

If I was asked I helped.

When doing a standing lift it's easy to use your legs but most of the turning people and lifting people up in bed use your arms and upper body.

I wouldn't say my arms were ever big but it's obvious not doing that type of work any more there is a difference.

I may be able to build some of that back up if I can get more active but I may have noticed a difference anyway just from being away from the little bit of lifting and turning I did do.

That makes a lot of sense and it's not something I even thought of until thinking about the feed bags you say your daughter used to carry.

Thanks-maybe I can quit obsessing on these dwindling muscles now and just focus on trying to use my arms more.

[Elfie]

I have no science to back this up, just my experience with POTS. I do not have EDS.

When I first got POTS I was very active and very muscular. I continued to do the same activities and be equally active (I had no idea that the reason I was feeling so crummy was because of HR, blood pressure, heart stuff at all-- I thought I was fainting because of pain). However, out of nowhere my muscle mass dropped dramatically for no apparent reason, especially in my upper body/arms. My strength decreased too, despite continuing to do the lifting I was already doing (I was rock climbing too!). I had POTS for over a year before I had any reduction in activity.

Now that I have been working out and am active again I have noticed something odd. When lifting weights or doing anything else, I don't get sore-- there is no pushing though the burn. I instantly go from able to complete the reps fairly easily to being DONE and not being able to finish lifting a weight in the time period of one rep. I have also noticed that when I have high heart rate/dizziness/other symptoms I am less able to do anything involving muscular strength. On my really good days I can still pick up the 100 pound arthritic dog with ease or open a tight jar lid. On bad days the dog ends up on top of me squishing me and licking my face and the still closed jar.

[sugartwin]

I've been diagnosed with EDS and have a similar problem. When you look at me, I haven't lost my "tone" but I have lost strength. I used to be an amateur weightlifter and I still have that build! But I can't lift my toddler cousins anymore. Not because my muscles are weak, but because the tendons and the ligaments are too lax to hold the proper joint architecture. In other words, when I try to use my muscles to lift any significant load, the joint can't hold its shape because of the weakness of the ligaments. When I tried to lift my two year old cousin my shoulders just came apart. Perfectly good muscles; just can't use them properly!

This is a fight I always get into with my physical therapists. I try as hard as I can to build more muscle, but when part of you is not cooperating (the tendons/ligaments) it's difficult. It really is important to push. Just not too hard. It's a balance Kay will eventually have to feel out for herself; no one will be able to tell her where the 'perfect' balancing point of not too much and not too little is.

[Noreen]

Have her vitamin D level checked. There is a school of thought within the EDS community that lower levels of Vit D can cause lack of/reduction in muscle tone.

hope the suggestion is helpful