Mayo Clinic Connect
How have you received enough physical exercise while dealing with neuropathy?? Do you walk in spite of the condition; tiptoe to get around; particular exercise program, etc.?
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Here it is. 💕
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@rwinney Love this, Rachel! A very cute tattoo!!! Lori Renee
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Like you, I feel that my body from my waist on down to my toes is not a part of me. Because I am paralyzed, I only feel burning pain. I scold my legs like they belong to some other being. When they go into spasms I tell them to “stop and behave”. It’s a strange feeling to feel that only my upper body belongs to me. Yes, shoes are an issue. My feet swell to twice their size in the afternoon, so if I need to go out, I have to put my shoes on in the morning after my shower. All my shoes are wide and most have a soft fabric for the uppers.
@darlingtondoll sorry to hear all your struggles. It sounds awful to deal with. I do not have any swelling so far. Does ted hose or copper support hose help you at all?
@rwinney Hi Rachel, Living with steady pain is no joke. I remember reading that you have central pain sensitization. Did I call that quite right? I do know it has to do with your brain amping up pain signals for no reason. There is where the theories of telling yourself that there is no reason for pain, that you are ok, etc., come into play. However, I really believe that with nerve damage illness, those kinds of things just do not work that well. I have done endless tapping, talking to myself like a nutcase that I do not need the pain, and that my brain needs to calm, but those things seem to work for only short periods of time. So I am happy to have my Kratom and medical marijuana so that I don't contemplate ending it all. Like you, I experiment with marijuana a lot. I want to take just enough to take away pain, but not feel high. I have not found that sweet spot. I wind up high, not intensely high, but pain is distanced. I can cope. I can watch tv, read, act like a person. I smoked marijuana in college, and had fun with it. I can't see the fun anymore. Maybe it is because I am a senior lady with different values. Maybe having to use it for pain takes the joy out of it. Like you, the biggest challenge is learning to live like this. It is intensely hard for me. I do not know if I will ever accept this life. I was a very hard worker and high achiever. Hard to give it all up. Meanwhile, I keep plugging along, waiting for my Dorsal Root trial. You have an intelligent, clear thinking mind, and I know how you struggle. And you are young still. So hard. Maybe our metamorphosis takes a very long time. If I could just accept this, it would help tremendously!!! Stay safe, Rachel. You are darling! Lori
I'm on hold for a drg stimulator, too. A couple of other issues have come to a screeching halt, as well. It's so frustrating to have important medical treatments suddenly brushed aside. I'm having trouble with binocular diplopia, the pain that needs to be addressed, and a procedure by the urologist. I'm being told that I can't see these doctors until the end of June. If the process of getting a drg implant is like the scs implant, I won't be getting it done until the end of the year.
I turned off my scs ten days ago, to assess its usefulness. So far the pain is pretty much the same as it was with the scs turned on. I don't know how long it takes until the pain gets as bad as it was pre-scs. I hope it won't be very long until I can see if it's still doing what it's supposed to or not.
Right now my pain level is pretty high because I took advantage of the beautiful weather and washed one of our cars. I'm hoping that tomorrow will be as nice as it is today, so I can wash the other car. Chores like that fall under the heading of exercise. But, on days like this, when I'm on my feet, I have to take an extra morphine. Usually I only take it in the morning and at bedtime, but my prescription is for 3 a day, so it's there if I need it. My pain specialist is in favor of medical marijuana, but the group he's with made the decision not to prescribe it. My PCP told me that if I were to use marijuana products he would stop giving me the morphine. I don't know if he'd make me stop Clonazepam too.
I'm glad right now that I get all of my prescriptions from Humana Pharmacy mail order, so I don't have to go to a pharmacy where sick people are likely going to be. We had to drive to town this afternoon to get some groceries, and drove through Taco Bell. So far, we've found that the restaurants we frequent are doing drive through or curbside pickup or delivery. Some of them will let people go inside to order, but it has to be to go. My wife enjoys cooking, and pays close attention to having a balanced diet. Under normal circumstances we eat out more than I'd like, so I'm liking the stay at home thing. She does the cooking and I do the cleanup.
I'm a chocaholic, too. But I need to shed some pounds that I gained over the winter, so I only eat one bite size candy a day. My wife gives me chocolate covered cherries for Christmas every year, and I count them as part of my daily ration. It takes a lot of self control not to raid the candy dish or cookie jar any time I walk through the kitchen.
Do you know how soon you'll do the drg trial? If it works, it's a great invention. I've heard both pros and cons, but if it works, it's worth giving it a try. I'm not afraid to try anything by this point. It sounds like you're already approved for it, and now, because it's not considered essential, it's been put on hold. I'll be waiting to hear how it goes with you.
I have support stockings I lie down on my side every afternoon and elevate my legs. I have had pulmonary emboli three times so I have to be careful with my swollen legs
When you are paralyzed it is like being on a very long plane ride only you never get off. Blood clots form in your legs and travel to your lungs
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This condition seems to be as complicated as allergies and as unexplored as Pluto. It helps me to be in touch with all of you and hear about your symptoms and the remedies you try. Before I joined here I was a little afraid of 'the great unknown Neuropathy' that I had been diagnosed with. Now that I know a bit more about it, I am fairly sure that when any new remedies are invented, we will hear about them soon. Peggy
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@darlingtondoll How awful for you. I almost lost my mom that way on a few different occasions. Very scary.
I was always too sick to be scared. Mostly, I was unconscious from inability to breathe. One time, I had multiple clots in both lungs. I remember hearing the ER doctor asking me for my next of kin. I usually got several bags of heparin in an iv and that usually helped. I had a collapsed lung every time.
@darlingtondoll Clearly you are a fighter and a survivor.
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@darlingtondoll, An increased risk of a deep vein thrombosis or pulmonary embolism is very scary. Being a paraplegic is very limiting as far as exercises go. Do your doctors recommend an exercise someone can do to help decrease the risk? You may be able to get help with a physical therapist provided by home care. The home care service should be free of charge depending on your health insurance. You can always ask the home care agency or the health insurance company about any charges you would be responsible for. The physical therapist would come to you. Once the restrictions from this coronavirus pandemic are lifted perhaps you can look further into getting more help. You would call your doctor’s office for the home care order and provide the fax number of the home care agency you prefer. If not your doctor’s office will pick one for you to fax the order to. I just recently was admitted to home health care. I selected my home health care agency best for me. Remember it is the patient’s choice, not the doctor’s. A physical therapist came to my home and provided exercises to help me improve my balance. I am thinking of you. It is up to you to find the help that works best for you. I still find new ways. It may take effort to get the information but that does not stop me. Hope this gives you more ideas. Good luck!
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I worked with a great physical therapist for five years. I know which exercises to do. My problem is that I used to go pool walking for two hours every day. It was great exercise, but I got three types of infections on my ulcer which is on my tailbone. I should never have gone into the pool with an open sore. Really stupid of me, but it is my only form of serious exercise. My wound care doctor has been trying to heal this thing for one year! Anyway, our pool at the community where I live is closed because of the virus, so I can only exercise at home doing squats and other simple exercises. I have been having serious angina pains for several months, but I just got another stent two weeks ago and I feel better, so now I can get back to home exercise again.
@darlingtondoll I am glad to hear you are planning to start your home exercise program again. Sounds like you may have a sacral decubitus ulcer because of its location. It will be difficult to cure with compromised circulation since you get edema in the lower extremities. Be careful. You are right. I would avoid getting the bandages wet. Do more exercises not involving being under water. A few years ago I could not walk so the physical therapist at home showed me exercises to do while laying on the couch to decrease my risk for DVTs. I did them twice daily. They were not difficult and long at all, maybe 10-15 minutes each time. Improving your circulation through exercise can not only help decrease the healing time with your sacral wound but will also decrease the edema as well.
My legs don’t work on their own but I can still do a few things. My decubitus ulcer is on my coccyx, so it is in a difficult area for healing. That is why I lie on my side in bed every afternoon. I see my wound care doctor every Thursday, but it is very slow to heal.
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My spinal cord injury is at T 7 so the legs can’t move on their own. I can’t lift them or move them so I am limited as far as exercise is concerned.
I go to bed very early every day, usually at 6PM. I am most comfortable when I lie down and get out of my wheelchair. I usually fall asleep by 7 and I wake up around 10:30 because my legs are on fire. I take off the covers and I lie on top of the blankets until I can take my next dose of Tizanidine and gabapentin and a dose of THC medical marijuana at midnight. The meds put me back to sleep by 12:30. I sleep until about 4:30 when the fire in my legs wakes me up again. I lie on top of the blankets and that makes the pain go away until I take my next pain meds at 6 AM. My legs don’t like to be touched by sheets and a blanket, but I need to be warm, so I try to sleep with covers. Right now, I am lying on top of the blankets and my leg pain is about a 2 on the pain scale. I wear shorts at home all day because my legs are on fire if I try to wear slacks. They can’t stand to be touched by fabrics.
As I read your post I remembered that there are heated mattress covers and wondered if you had tried one. I only have problems with sheets and blankets touching my feet, so a blanket lifter takes care of that, but I don't know about a lifter to keep them from touching my whole body. I guess that would be called a tent.
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