After decades of experiencing ataxia symptoms, I’ve reached the stage of experiencing stiffness and pain.
For some reason this problem doesn’t seem to effect everyone, my specific diagnosis is Idiopathic Cerebellar Ataxia..
What are the most important facts to know about muscle stiffness?
Muscle stiffness refers to a tight feeling in the muscles, which can be accompanied by pain and difficulty moving. Muscle stiffness often arises after changing exercise routines, overusing muscles, or being physically inactive for long periods of time. Otherwise, muscle stiffness can be caused by an underlying condition, including myopathy, neuromuscular disorders, and neurologic disorders. Signs and symptoms will vary depending upon the underlying cause of muscle stiffness, but they can feature pain, difficulty moving, spinal curvature, or difficulty balancing. The cause of muscle stiffness will be diagnosed based on medical history and a physical exam, with follow-up assessments if needed regarding the indicated underlying cause. Most commonly, muscle stiffness can be treated at home by resting the stiff muscle, applying heat and cold, stretching, and massaging the muscle. More extensive treatments may include physical therapy and medications, depending upon the underlying condition.
Hi yes i m now suffering a lot with pains in legs ..some drs say it nothing to do with ataxia others say yes ..rendevous IRM legs and back Still dont know what atakia Syndrome i have but looks like its cerebellar ataxia
I am taking very strong pain killers in thé morning thé pain is so bad its hard to get out of bed
I heard that it can be present in Parkinson’s disease. I have now been told I have genetic young onset Parkinson’s. They say there is faults on the PRKN gene. I must say I do not present like a Parkinson’s patient at all. I also have mild ataxia.
I’m sorry..that must be confusing for you. I found this link that confirms what you’d heard.
Ataxia is not a common feature in Parkinson's disease. Nevertheless, some rare forms of parkinsonism have ataxia as one of the main features in their clinical picture, especially those with juvenile or early-onset.
With Neurological diseases..some symptoms can ‘overlap’, and it may take some time to get an exact diagnosis.
🙂Did you know that you could contact others coping with YOPD
Hi,my husband suffers from SCA10 and he started to have pain in one of his legs about 2 weeks ago. The pain is in the calf area. He can’t seem to put weight on this leg so his mobility is reduced considerably. We have neurologist appointment today so let’s see what he says…
Hi Wobblybee - The neurologist didn’t think it was anything to do with ataxia and suggested to see GP. Seeing my doctor today and see what he suggests.
My husband has gone through a lot this year. He had urine infection and ended up in hospital earlier this year. Came out of the hospital with a long term catheter. Had uti several times and had antibiotics to clear that. Every time he has uti his mobility reduces and now he has this problem with the calf pain and mobility is even worse. Hope they can sort this out and he is on his feet again.
We went to see the doctor. I was very pleased that she did a thorough check up. Apparently his left leg is weaker than the right one due to ataxia. Over the years he has been compensating this weakness by using the right leg more. This overuse has paid by straining the calf muscle and maybe even snapping the muscle fibres. So the doctor suggested hot and cold treatment and gave some excercises to do. Hope this will help eventually and his normal mobility returns…
Hi wobblybee I have been struggling with pain and muscle weakness for a while my hands feel like they have a tight glove on them and my forearms and elbows can be really painful I have a tremor under my skin and I have developed a slight tremor in right hand. Most of my symptoms are left side but right side getting involved now. Left foot and calf is at it also. Seems like something new each week 🙃
I was in the middle of a reply to you..when my iPad shut down ( low battery ) I lost the reply and have had to start again 🤭
I empathise with your nerve pain, I’ve experienced it..but for the most part I contend with ‘tingling/pins & needles’…and it’s caused by Peripheral Neuropathy. My hands and feet can become icy cold. So far, I haven’t enquired about medication, but it’s probable you could be prescribed something to ‘take the edge off’. The tight glove sensation, and ‘tremor’ under your skin, is linked to Peripheral Neuropathy.
It’s confusing when symptoms move around, you adjust to coping with something and then suddenly something upsets the applecart, and you start afresh. But it keeps us on our toes 😉
Hi wobblybee it’s so annoying when that happens 🙄 I also get the pins and needles in my left foot/hand I asked the neuro i see for the the headache syndrome I have because I get a weird sensation that I have an army of ants with electric boots on crawling over the left side of my face and forehead. Weird stuff but can be really painful and debilitating. The joys 🥲we press on and NO SURRENDER
Hello there,I have to say that I too suffer with all the symptoms of muscle stiffness mentioned above.
I am pleased to read such a detailed explanation of the symptoms. I have been diagnosed with SPINEAL CEREBELLUM ATAXIA (SCA3) after battling muscle stiffness , I feel exhausted depending on the severity it can take 2-3 days to fully recover.
I was not sure of what symptoms to expect from having this condition and it has been recently, I am starting to recognize and understand when I am affected.
I think it has taken me so long because the fatigue did not affect for long periods in between.
Now it is more frequent.
I feel more and more anxious about going out alone and have had a lot of falls,
I never go out alone and even have to use a walker indoors. I was taking 100mg of baclofen three times daily but decided to wean myself off to see what it was doing. I was absolutely fine until I stopped the last one. I became incredibly stiff and my mobility becme even worse. I have re-introduced 100mg or on tablet a day which I am hoping will be enough but it is a bit of a wait and see situation. The baclofen lso seemed to help my swallowing and when I stopped it had a couple of really scary choking fits.
See your doctor immediately, you are overdosing at 100mg. Do not discontinue immediately otherwise your body may go into drug withdrawal and a trip to hospital will result. Baclofen is a dangerous drug to experiment with
i appreciate your concern but my Consultant prescribed my Baclofen and advised me how much to take 100mg three times daily. My Doctor gives me the perscription.
🙂Apologies for butting in..It would do no harm to confirm your prescription is correct.
This medication needs to be started at a low dose and built up gradually ..this particular amount may be causing your problems, and should have been monitored.
I genuinely appreciate all the help and advice that I get on this site. I had an appointment with my Consultant in January who confirmed that my current dose of Baclofen is correct and that I could increase the dose if I wanted. I am aware that Baclofen is a muscle relaxant and I thought if I stopped it maybe my bladder control would improve. I was on 100mg three times a day and know that it has to be stopped gradually. I left a week between stopping each lot, when I stopped the last 100mg I became really stiff, my quality of life is pretty low and therefore decided to start taking 100 mg in the morning . Once again I really appreciate how caring this community are.
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