Pain

[ww-wibblywobbly]

Hi all,

I see from some people's posts that some of us have no pain. I actually have pain somewhere or other most of the time. This is cos I have a fair degree of spacistity so my contracted muscles often hurt. Stretching helps and so does keeping moving.

Sometimes though I have pain just when something is pressed against me, not necessarily with any force. For example, today I seem to be having a painful day so at my physio session this morning, the physiotherapist massaged my back, shoulders and neck, where most of my pain was today. But after the massage, my ribcage really hurt where I had been lying on my front. This is not the first time, but today it really hurt! The physiotherapist does not press hard when massaging me.

I have SCA or CA, which I have been told is most likely genetic, but as to date I don't know which gene.

Just wondered if anyone else suffers from this? And if so what type of ataxia you have? Also can anyone explain why we have this mystery pain. Yesterday I had no pain, and my back and neck etc weren't contracted any more than usual according to the physiotherapist.

Thanks all

Alison xx

[claire01]

Hi I have Episodic Ataxia and I too experiance pain mainly in my knèes and lower back my GP has said this is due to the ataxia gait.

[Susie1972 in reply to claire01]

My knees kill me, my neuro has spotted me walking with extended knees, hence the pain as no choice like you walking extended gait.... my physio has really noticed it and we are working on it to reverse it back to normal. Only had 2 sessions. Will keep u posted🤞👍

[Staggy1]

Hi Alison

Sorry to hear about your problems. I have CA and experience most of my pain in my knees and my hips when trying to put my boots on (still want to look fashionable and I am resisting buying Velcro shoes!) I am experiencing loss of strength and pain particularly in my left upper arm and deciding whether to check it out and see if it is Ataxia related.....

Carole

XOX

[Legs-alive]

Can I just say C/A is not genetic so it’s most likely to be a type of SCA if they think it’s genetic. I have C/A bit I also have polyneuropathy, scoliosis, osteoarthritis & tendinitis in my shoulder & in extreme pain with these to the point I’m on morphine patches & oromorph as a top up when needed, amitriptlin & pregablin both of these for the nerve pain.

Ataxia isn’t normally accompanied with pain so I’d suggest going to see your gp & explaining about it, where it is etc as there could be another underlying problem that’s causing your pain. Hopefully they will be able to sort you out & make you more comfortable. Don’t suffer in silence.

[ww-wibblywobbly in reply to Legs-alive]

Hi,

I'm always confused about SCA and CA so thanks for clarifying that for me.

I have a rdv with the neurologist at the end of June so I'll see what she says. These pain days aren't very often, but are fairly new. I can't stand anything pressing against me when they happen. I imagine the neurologist will just scribble on her pad and say nothing much!!! The pain is pretty much all over the place so I think it's much more likely a nerve problem, so I'll wait for my appt rather than see my GP for now.

I'm sorry to hear about your pain and I do sympathise with you. Pain really gets you down.

Keep strong

Love

Alison xx

[Susie1972]

Legs alive is correct. It not genetic.

Cramps n bad aching muscles constant so I keep moving as much as. I take baclofen and gabapentin but only at night so I can sleep without cramping up. 2 co codamol and cod liver oil in morning . My shoulder is knackered and my physio is going to have a look at it as the pain there is really bad...

We all living in limbo I think and not a clue! I due for a 8 month "review" at neuro hospital soon... feel like I wasting my time, all she does is scribble on a pad🙈 and says carry on what u are doing???

[pinjem in reply to Susie1972]

"Living in limbo" describes it, I have to list everything I have achieved some days to remind myself I do achieve some things, even if very minor and it contributes positively to others and myself.

[ddmagee1]

I have bad pain, with contracted muscles, at times. Probably, several times a week. I get it in my legs, back, jaw, shoulder/arm. I hate it when I get the spasms! Sometimes it just takes my breath away! I do a lot of slow stretching, and range of motion exercises daily, which, I believe, helps to lessen the frequency of the spasms.

[ww-wibblywobbly in reply to ddmagee1]

Hi,

Yes I deal with my contracted muscles and spasms with stretches. I did take baclofen for a few years which really helped for a while, but then the benefits reversed on me, the baclofen started making the spasms and contracted muscles worse. I try to keep chemical medications to a minimum as my body doesn't react well to them. My contracted muscles/spasms are literally all over my body and internally too.

I seem to be lucky here in France as I see a physiotherapist twice a week. At the end of every session he stretches me and massages my neck. I seriously think I would be in a wheelchair full time if I didn't do these exercise/stretching sessions with the physiotherapist.

This pain I understand even though I hate it! But what I don't understand is these occasional days when I kinda have pain all over and any pressure touching me really hurts. Luckily at the moment, this happens only a few days a year.

Thanks for sharing

Xx