Hi and RSMD

Hi,

After checking on here regurlarly, I see that to date, no one else has RSMD (Rigid Spine Muscular Dystrophy). It must be a rare form of MD indeed! Or maybe there are some posters on here that do, but are shy to talk about it? I wish there were others, as it would be great to compare experiences and findings!

Anyway, just an update. I have been in contact with the MD Physiotherapist who I saw last year, to have a review with her. My nature of my review is to see what sort of physio exercises I should be doing now and to hopefully continue with these physio/exercises. I have an appointment with her Wednesday 19th November.

Last year it was a mutual agreement between my physiotherapist and myself, that she couldn’t continue giving me physio exercises to do at home, because I couldn’t commit the time or energy required to do these, as I had a physically demanding job which requires me to do shift work. I have decided to slow down with these shift work and physically demanding job, so hopefully I can commit more to physiotherapy exercises to try and keep the muscles I have got, from wasting away and toned.

I will keep you all posted!

Liam.

@catatude wrote:

@liam40 wrote:

Hi,

After checking on here regurlarly, I see that to date, no one else has RSMD (Rigid Spine Muscular Dystrophy). It must be a rare form of MD indeed! Or maybe there are some posters on here that do, but are shy to talk about it? I wish there were others, as it would be great to compare experiences and findings!

Hi ya

32 and have Rigid spine SPN1 mutation. and also have the pain you describe ie the pin/needles in feet and more painfully the pain in bum and upper legs. I go every few months for spinal injections direct into tail bone to combat sciatic type pains. after a few jags was bale to reduce and stop the amytripulane and dicolfenic

physio. they do tend to get feed up with us mdiers dont they my last one made me feel like a time waster as in her words “I couldn’t be improved” . I went for hydrotherapy and found that really good.

cat

Hi Cat,

Yay, someone else with RSMD!

Not been offered the spinal injections yet. Do they inject into the nerves at the base of the spine? If they do, Not sure I want to go down that route as my mum had this type of pain killing injection and after she had it, she couldn’t feel her legs. The doctors thought they’d paralysed my mum! Thankfully after a couple of hours my mum started to feel both her legs again. You can imagine, it was a massive relief for everyone!!!

What other problems have you come across so far with your RSMD?

Thank you for replying to my post!

Liam.

Hi Cat,

When I was a child, the doctors thought there was something wrong with me, but they couldn’t/didn’t investigate it further. But now, there’s more vast knowledge, tests and scans than there was in the 1970’s!

The problems I have been experiencing apart from the nerve pains in the buttocks, legs and feet are, I’ve had a limp for years but the last year or so, I’ve noticed the limp is getting worse. I also walk rigid/straight, because of this rigidness I’ve had people say to me “have you been in the armed forces because you walk so upright/straight?” Makes me laugh most of the time! When I carry things in front of me I tend to lean/arch backwards to try and compensate for the loss of muscle strength due to lack of muscle tone and weakness in the lower back and lower abdomen (which are the core muscles). Also when carrying bags of shopping up a flight of stairs, if I take two bags up the stairs at the same time, usually I get as far as half way up and then have to stop, then continue the rest of the way by pushing up on my right leg and then lift the left leg up until it’s on the same step as the right one. I can’t seem to continue pushing up with my left one, I also start bending forward at this point instead of keeping upright. Unfortunately I live in a maisonette in a block of flats where there is no lift, just a flight of communal stairs leading from the ground floor to the first floor where the door to my maisonette is. I do get out of breath by the time I’ve got all the shopping in. In my maisonette I have a spiral staircase, which I’m finding cumbersome to get up when carrying things. If I do have to carry something up, I usually carry it in the hand furtherest away from the handrail and use the free hand to hold on and pull up on the handrail. I actually have to do this even with nothing in my hand. Any stairs anywhere are a problem and do make me short of breath when climbing up them. Also, like when going up the stairs, I have to hold onto the handrail coming down the stairs for stability. When I’m walking up a slope/hill, i tend to lean forward whilst going up. I also can’t move my body quickly. I also can’t run at all.

Like you, I have breathing problems. When walking up slopes/hills or steps, I get breathless. If I try and walk fast, which I can’t really do, I get out of breath. I also have a breathing problem at night. It was discovered through undergoing a sleep study because I was getting headaches/heavy heads in the mornings and wasn’t feeling refreshed after sleeping, that I have a form of sleep apnoea. My diaphragm doesn’t do its job properly whilst I’m in my deep sleep state, this is due to the RSMD. When I’m asleep, I don’t get enough oxygen in my bloodstream and I retain carbon dioxide in my bloodstream. Therefore I have to use a Nippy3 ventilator whilst sleeping. I can’t lie flat unless I’m using the Nippy, if I haven’t got It with me if I’m sleeping somewhere else, I have to sleep propped up. Using the Nippy has helped with the apnoea.

Liam.