I’ve read that a lot: there’s no pain in MSA. At least, I thought so. I have suffered from pain before, which was very strong and I was relieved to read that.
In the meantime I know from countless forum entries, from well-known MSA patient reports and from my own experience, that those, who are pain-free, belong to the minority. No forum entry will have a higher success rate, than one about pain.
I have heard many patients complain about pain “in the whole body”, fortunately this is (yet?) unknown to me. What kind of pain this might be, is completely foreign to me.
Then I have heard, many complaining about back pains. What kind of pain others have, is also unknown to me. Is it lumbar vertebrae, thoracic vertebrae, neck vertebrae or shoulders?
I have a kind of “lumbago” in my lumbar spine, since I was 25, I get it once or twice a year, and in my opinion, this pain has nothing to do with MSA. With MSA, the complaints only become more difficult, I am completely disabled then.
There is also another kind of pain, which I get in the kidney area, on the side. This is not a permanent pain, it comes up when I “overstrain” myself, although I don’t need much for that. When washing up, or vacuuming, it is already happening. When I think about the fact, that I used always to lift off one leg off while washing up – like a stork – now, two of them are not enough. This pain is rather dull, feels like my back is about to break in two pieces.
Sometimes I get pain in the shoulder area. Then I have the desire to “remove the shoulders”, because the pain is underneath. This is more kind of a stabbing pain. The last two kinds are more noticeable when straining and can only be relieved by sitting down.
A doctor once said, that ascending pain in the shoulder, can be a sign of a dropping blood pressure, so sit down as soon as possible.
Once, I got this stabbing pain in my shoulder while shopping, pushing the shopping trolley, – an alternative to a walker – and realized that I have no possibility to sit down. I ended the shopping tour abruptly, went as quickly as possible to the cashier, and went quickly into the car. This belongs to less joyful experiences.
With increasing age, not every pain is MSA-related, of course. Many of us suffer from arthritis, from signs of wear and tear, which complicates the symptoms, but the reason is elsewhere.
Now to the pain in my legs. I learned something from my physiotherapist in rehab: we don’t have a bad posture, we have a bad load. Pain in the outer hips and buttocks, because these muscles are under particular strain – we “waddle” with Ataxia. Stretching exercises help here – which has also proved as successful for me.
Pain in the thighs, like aching, sore muscles after sport – I think magnesium has helps there, helped me.
Many suffer from secondary neuropathies, I myself don’t think so yet, but I’m not sure. Many people report numbness such as tingling, itching, burning. Cold and warm discrimination disorder is also common.
The thing that plagues me the most at the moment, and the worst, is the pain in my hip. The only strange thing is, that when I lie down, I have no complaints at all, but if I exercise regularly, it does get better. Especially when getting up and the first 2-3 steps are difficult, because of the pain the balance is much harder. From the low couch, I cannot get up at all, only with difficulty.
I help myself with occasional retard painkillers (which have to be prescribed), especially when I have to go somewhere, but many people prefer stronger drugs, opiates.
According to my information, the small muscles are the first to atrophy, suffer most from a lack of impulses from the brain. Seems understandable to me…
But, what is certain is that if I do nothing, it will be fine for two days at most, then the pain will come. You have to overcome an “inner bastard”, but exercise, physiotherapy is enormously important. To avoid pain and slow down the breakdown, because: “Use it or loose it”.