Muscle pain

[Guest guest]

, I think you are right. I am going to do that at my next

appointment. I have seen lots of letters in this group that are

experiencing the same thing. Thanks for your advice and information.

[Guest guest]

I always thought it was part of the PA until they sent me down to Va

Mason this past summer. When I asked if it was a routine part of the

PA, the rheumy's immediate response was no, that's your fibromyalgia!

I've noticed that there are a number of us on this list, and somewhere

I think I may have even seen a figure around a 1/3 of us with p/pa

also have both FM and IBS.

Cheryl M.

[Guest guest]

Barb,

If I screw up and work in the garden too much at one time, yes I get a soreness

with muscles. Simply by resting and using ice packs, that goes away and I'm on

to something else.

I had bad lower back and hip pain around 2001 from a slipped disc. After all

conservative methods and experimental treatments failed, I had a fusion in 2002.

Recovered 100%.

In 2009 after experiencing hip and back pain, and conservative treatments, the

MRI showed nerves were being squeezing by bone. So in a different back surgery,

the bone around the nerves was cleaned out and opened giving the nerves more

room. Then L4/5 was fused. 100% recovery there too. Age related arthritis in my

spine is what keeps me moving in the pool and on the bike.

Gretchen

[Guest guest]

Hi Barb,

 

The pain you describe can be related to CMT.

 

Scoliosis can be CMT related, as can the hip degeneration you describe.  I have

both of these problems also and they are CMT related in my case.  I've had

one hip replaced and the other needs to be.  I also share the standing

intolerance and other issues you describe.

 

Regarding your question about how the hip degeneration feels...for me the pain

started as an occasional ache and stiffness after sitting or standing in one

place for awhile.  After I got moving, the pain would feel better...typical

arthritis type of symptom, common with degeneration.  For many years, it was

more of a nuisance than an impediment.  I continued being active, doing lots

of dancing, and just took anti-inflammatories to cope with it.  The pain got

increasingly worse over a 10+ year timeframe, until finally my activity was

curtailed and I had to have the hip replaced, when I was 38 yrs.  By the time

it was replaced, the hip socket was bone-on-bone and even walking across a room

was incredibly painful with each step.

 

With my second hip, the degeneration has been slower, likely because I favored

that leg for many years due to an early knee injury and I've been a lot less

active in recent years.  In that hip, I get the typical pain/stiffness after

being stationary for awhile.  When walking, I get a clicking, mild

discomfort, and an occasional sharp pain grab.  Pain increases substantially

with more walking, i.e. 100+ ft, so I use a scooter for distance.

 

I've taken Voltaren (a non-steroidal anti-inflammatory) since my early 20's. 

When I have to go off of it, like before an injection or surgery, I begin to

feel like the Tin Man in dire need of some oil within a couple of days.  The

difference between being on and off of this medication is huge for my joints. 

At some point, you may want to give a non-steroidal a try, if your pain gets bad

enough that it can't be ignored or it keeps you up at night.  I also get hip

injections, which help a great deal as well.

 

 - CMT1A

From: Barb Bartz <bartz.barb@...>

Subject: Muscle pain

Date: Monday, September 27, 2010, 11:51 PM

 

Hi,

I just joined the CMTA and received their Sept-Oct newsletter via

PDF. I was reading one of the stories and noticed that someone with

CMT- who had been out walking all day- had difficulty sleeping that

night because of the lower back, hip and leg pain he was experiencing

from overdoing it. This got me to thinking, because my neurologist

during my initial exam asked me if I had any pain. I thought she was

referring to my hands and feet, and I have no pain in those areas.

But I do experience lower back discomfort/pain and have off and on

for 30 years. I have always contributed it to my scoliosis which was

diagnosed when I was 22. I have found if I walk every day and

exercise it is better, but if I sit all the time it is worse. That

is one of the main reasons I got into exercise. In the past few

years, I have also started to feel lower back pain if I have to stand

for a period of time on a hard surface such as a concrete floor

(usually more than 30 minutes). My lower back muscles tighten up. I

thought this was due to growing older. And my right hip has hurt for

years- now my left hip is hurting in the past week or so. I saw an

orthopedic surgeon about the right hip 5 or 6 years ago. He said it

might be the beginnings or arthritis and that the Tae Bo I was doing

was only aggravating or even causing the problem (so I quit doing

that).

All of these aches and pains are manageable and the lower back pain

comes and goes. I do not need any pain killers- I just notice they

are there, but they do not really bother me. All of that to say,

after reading that article, I'm wondering if all of these aches and

pains are in fact due to the CMT and also scoliosis. I have read

some on hip dysplagia, which I understand can happen to people with

CMT, but do not fully understand it or its symptoms. Just wondering

what you think and if you have any suggestions.

Blessings,

Barb

[Guest guest]

Thanks to all who responded to my email regarding hip and lower back

pain. Donna, thanks for the information you shared from the

physiotherapist who commented that CMT patients tend to use their hip

flexors for walking (as opposed to quads or calves to push). I

notice when I am walking that I am not able to walk as fast as I used

to and that my walking strides are not as smooth as they used to be.

In an effort to increase my pace (in order to get my heart rate up to

aerobic level), I think I may be stressing the upper leg/hip area. I

googled " hip flexor exercises " on the internet and am reviewing

those. I saw a physical therapist a few years ago for a knee

inflammation problem I was having. He was quite good (specializes in

sports related injuries), so am considering seeing him again to see

what exercises he might recommend for hip flexor and lower back

issues. I really want to stay as active as possible without injuring

myself or overdoing it.

Blessings,

Barb