Sometimes I experance pain/ache in my legs with this ataxia. I'm learning to work with my body and head off as much as I can. Part of that is learning to deal with it, and use things (trial and error) of what helps me when I'm in it.
I copied this article from Chronic Pain Management site because I think it can fit any problem we experience with ataxia. What do you think? Do you ever have pain/ache with your ataxia?
What We Have Learned
In 30 years of helping each other, we’ve learned a lot. Here is a bit of that wisdom:
We need the support of others who experience and understand chronic pain.
Recognizing emotions helps us to understand ourselves.
While our pain is certainly not all in our heads, attitudes and expectations do make a difference.
Learning how to relax is essential. It helps prevent tension and redirects our attention on to other things we have some control over.
Staying active, within realistic limits, can help us remain flexible and strong and reduce our sense of suffering.
It is important to set realistic goals and chart our progress toward them.
Chronic pain not only involves the person with pain, but the family as well.
Hearing others talk of similar feelings and experiences caused by pain reduces our isolation.
There are no wrong feelings.
Half the battle is won when you begin to help yourself.
Check lists for you to print out and fill out for yourself and bring to your Dr. To see where your having any difficulty.
There are forms to prepare 4 your health care visit here. You don't have to share information on line in order to get this help.
You can print out a allergy card, pain log, graphical tool card 4 meds that you take, a follow up card, quality of life card etc. Check this link out! :0)
I have struggled with pain a lot because I tend to use the wrong muscles to do things. The prof says - pain is not part of ataxia, but I totally disagree, my legs ache at night time and my back hurts during the day and its mostly because I keep active. The physio gave me a tip that works - try two hours of activity and two hours rest. I gets lots more done that way. at night I find that the only thing that works is to get up and make myself a hot drink. walking and standing seems to get the blood flowing. If I stay in bed it just gets worse
It is so reassuring to read these comments.. I am so grateful to you for sharing.
a rheumatologist once told me that ataxia didnt in itself cause pain but the stress on our body caused by 'compensating' our imbalance resulted in pain.
I only have to get up in the night to visit the bathroom to relieve pains. Sometimes I cant tell where the pain is - I guess it is just core pain.
also the pain is not the type of pain that requires pain killers.. it is dull, throbbing, nagging pain that can be overcome by distracting the mind. Some pains are sharp but dont last long enough to warrant taking a painkiller.
Wonderful post Jeannie! Thank you. I agree with many comments that because of how we use our muscles we tend to have pain. I find if I over-do anything physically my back and legs get very tight and sore. I use to attend physical therapy my physical therapist told me to strengthen my core as my back muscles were extremely tight. Guess I use them to hold myself up. What helps alleviate my pain is exercise, stretching and rest if fatigued. I also take 300 mg of CoQ10 daily and that really helps my muscles. Everyone is different and what works for one person doesn't work for someone else. so I guess we have to be our own "patient advocates" and try different things...
Like you, I have pain/ache in my legs. How they can be useless for standing and/or walking, yet hurt so much is all part of living with Ataxia ! Sleep comes in fits & starts, so being tired is all part too ! Sometimes I could sleep for England ! Yes, some pain comes from frustration, but looking backwards is of no use, getting through the day to tomorrow is good and bad - progressive disability means that tomorrow will be fractionally worse than today, we may not see or feel it (sometimes, we do). Staying active and positive is fine on 'good' days, but not so much on those 'less than good days' - guess I must be having one of those, that is why I sound like a 'moaning minnie' !
Like you, I have pain/ache in my legs. How they can be useless for standing and/or walking, yet hurt so much is all part of living with Ataxia ! Sleep comes in fits & starts, so being tired is all part too ! Sometimes I could sleep for England ! Yes, some pain comes from frustration, but looking backwards is of no use, getting through the day to tomorrow is good and bad - progressive disability means that tomorrow will be fractionally worse than today, we may not see or feel it (sometimes, we do). Staying active and positive is fine on 'good' days, but not so much on those 'less than good days' - guess I must be having one of those, that is why I sound like a 'moaning minnie' !
I'm with you Alan, as I have good and bad days with the challenges of ataxia! I have many"piti-parties" but try to stay positive and exercise even when I don't feel like it. As a rule, it helps me feel better. We're all different though, so what works for one person doesn't necessarily work for someone else. I guess just knowing I'm not all alone in this helps me get through each day...