Living with Neuropathy - Welcome to the group

Posted by Colleen Young @colleenyoung, Jul 14, 2017

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

@helennicola

Hi Avmcbellar, I’ve always been aware of the possible long term side effects of steroids, that is why most doctors will only agree to administer a few over a protracted period. With myself, it was always a last ditch choice after trying everything else. Helen

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@helennicola I agree. It depends on the issue. That and surgery is my last resort after trying everything else. In my case with tendonitis many years ago, i did not know any better and had an injection. Needless to say, the injection was so painful that it caused me to tear. After all that, it did nothing to help my health condition. My tendonitis was an inflammation caused by a repetitive movement. Since then, over the years, I have learned to stop that movement and the inflammation will dissipate in time on its own. Last year I had developed tendinitis in a different location. It was painful. I did nothing. Not even a pain medication. Within a few months, it went away. Best wishes to you.Toni

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@avmcbellar

@helennicola I agree. It depends on the issue. That and surgery is my last resort after trying everything else. In my case with tendonitis many years ago, i did not know any better and had an injection. Needless to say, the injection was so painful that it caused me to tear. After all that, it did nothing to help my health condition. My tendonitis was an inflammation caused by a repetitive movement. Since then, over the years, I have learned to stop that movement and the inflammation will dissipate in time on its own. Last year I had developed tendinitis in a different location. It was painful. I did nothing. Not even a pain medication. Within a few months, it went away. Best wishes to you.Toni

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Toni, sorry for your painful negative experience, I know tendinitis and bursitis can go away on their own but it ain’t happening with me! I did have frozen shoulder about 20 yrs. ago which was the same story but after 1 yr. it did finally go away on its own, p/t was very painful and did not help. I have had this hip bursitis for 6 months now which was not caused by overuse, accident or repetitive movement and have tried everything so hopefully an injection will have some lasting benefit. I had one years ago which lasted for 2 yrs. and another which eliminated my plantar fasciitis for good after trying everything else for 1 year with no success. I do think having had about 4 injections and taking steroid pills for poison ivy and an allergic reaction to mango skin over a 2-3 year period contributed to my having cataract surgery sooner than my eye dr. anticipated. I was 71 at the time so we don’t know for sure but I’m grateful because now I can see perfectly w/o the need for lenses. 😁 Helen

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@helennicola

Toni, sorry for your painful negative experience, I know tendinitis and bursitis can go away on their own but it ain’t happening with me! I did have frozen shoulder about 20 yrs. ago which was the same story but after 1 yr. it did finally go away on its own, p/t was very painful and did not help. I have had this hip bursitis for 6 months now which was not caused by overuse, accident or repetitive movement and have tried everything so hopefully an injection will have some lasting benefit. I had one years ago which lasted for 2 yrs. and another which eliminated my plantar fasciitis for good after trying everything else for 1 year with no success. I do think having had about 4 injections and taking steroid pills for poison ivy and an allergic reaction to mango skin over a 2-3 year period contributed to my having cataract surgery sooner than my eye dr. anticipated. I was 71 at the time so we don’t know for sure but I’m grateful because now I can see perfectly w/o the need for lenses. 😁 Helen

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Helen, I hope you find relief with your bursitis soon. I have never experienced that, only inflammation of the tendon. I know it involves the fluid sacs at your joints. Perhaps knowing the cause will help to find a remedy. To have a frozen shoulder for 20 years has got to be awful with the pain. How do you avoid the use of an arm? I know someone who had a frozen shoulder. PT exercises did not help at all. In fact the symptoms were very much like tendonitis of the shoulder. Putting the arm behind the back was difficult and very painful and so was extending the arm above 90 degrees. I tried to avoid those movements. It wasn’t easy. The moment I felt the pain when reaching for something, I stopped. Luckily it went away without medical intervention. It took a few months though.

I have had a hip problem for over 30 years. At first I was told it was tendonitis and took medications for it. I decreased certain motions but nothing helped. I just dealt with it until recently my hip started making clicking noises. My MRI revealed I had a hip labrum tear. I was told people who had surgical repair had developed arthritis in the hip early. I had no arthritis. Sometimes surgical intervention may not be the best solution. I had a wrong diagnosis initially. Goes to show doctors do not always have answers either. Fortunately, technology today has improved to allow for a more accurate medical diagnosis. We do the best we can with the choices we are given. We owe it to ourselves to be our own advocate. After all we know our pain better than our doctors. Wish you the best, Toni

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@avmcbellar

Helen, I hope you find relief with your bursitis soon. I have never experienced that, only inflammation of the tendon. I know it involves the fluid sacs at your joints. Perhaps knowing the cause will help to find a remedy. To have a frozen shoulder for 20 years has got to be awful with the pain. How do you avoid the use of an arm? I know someone who had a frozen shoulder. PT exercises did not help at all. In fact the symptoms were very much like tendonitis of the shoulder. Putting the arm behind the back was difficult and very painful and so was extending the arm above 90 degrees. I tried to avoid those movements. It wasn’t easy. The moment I felt the pain when reaching for something, I stopped. Luckily it went away without medical intervention. It took a few months though.

I have had a hip problem for over 30 years. At first I was told it was tendonitis and took medications for it. I decreased certain motions but nothing helped. I just dealt with it until recently my hip started making clicking noises. My MRI revealed I had a hip labrum tear. I was told people who had surgical repair had developed arthritis in the hip early. I had no arthritis. Sometimes surgical intervention may not be the best solution. I had a wrong diagnosis initially. Goes to show doctors do not always have answers either. Fortunately, technology today has improved to allow for a more accurate medical diagnosis. We do the best we can with the choices we are given. We owe it to ourselves to be our own advocate. After all we know our pain better than our doctors. Wish you the best, Toni

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Hi Toni, sorry if you misunderstood, I had a frozen shoulder 20 years ago which after 1 yr. resolved on its own after trying P/T unsuccessfully. My ortho does not know what caused my bursitis after ruling out the usual suspects so I can’t really change anything hence the last choice of a steroid injection. Helen

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@johnbishop

Hi Toni @avmcbellar, The yogurt maker I bought came with 8 six oz jars with snap on lids. I've since purchased 8 more six oz jars with screw on lids so that I can make a new batch when needed. My wife and I usually get 2 servings with each jar and top it with fresh fruit/berries. Also I've messed up a few batches by cooking too long or too high temp where it got a little sour and more like cottage cheese and some liquid separation (whey/protein I think). That's when my wife made some homemade cranberry sauce that probably has too much sugar in it but makes the bad batch palatable and it still has the gut bacteria.

I followed the recipe on @LeeAase's Best Yogurt Ever blog (https://social-media-university-global.org/2020/05/best-yogurt-ever/) which has links to the yogurt maker, the BioGaia tablets, which contain the bacteria, and the inulin powder as a source of prebiotic fiber on which they feed. I didn't watch my first batch and it was the worst because the yogurt maker Lee has wasn't available at the time I bought mine and the one I got I think the temperature control may not be as accurate but I'm not sure. He made his at 104° for 36 hours. When I used those settings mine turned out like cottage cheese and more liquid. I've found mine to work best at 104° for 14-17 hours. Then it turns out thicker like shown in his video. The last batch I made had one jar that was more liquid but the rest have been fairly thick but not quite like Lee's so I'm going to set it for 17 hours and check it each hour starting at 14. It takes 10 of the BioGaia tablets to make the first batch and afterwards you can use a couple of spoons of the yogurt as a starter for the next batch along with some more inulin powder.

What's nice about using a yogurt maker is the automation. I can mix all the ingredients and pour the liquid in the jars in about 10 minutes then all I have to do is pour the liquid in the jars and set the time/temperature. I've seen recipes for InstaPots but then you would have to scoop it out and into jars. With the yogurt maker you just have to take the jars out, wipe them off to get the water off of the outside and stick them in the refrigerator.

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I've had better results by cutting my yogurt making time to 18-24 hours instead of 36. I had gotten a couple of bad batches with the longer time, but since I cut back to under 24 hours I haven't had any problems.

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@avmcbellar

Helen, I hope you find relief with your bursitis soon. I have never experienced that, only inflammation of the tendon. I know it involves the fluid sacs at your joints. Perhaps knowing the cause will help to find a remedy. To have a frozen shoulder for 20 years has got to be awful with the pain. How do you avoid the use of an arm? I know someone who had a frozen shoulder. PT exercises did not help at all. In fact the symptoms were very much like tendonitis of the shoulder. Putting the arm behind the back was difficult and very painful and so was extending the arm above 90 degrees. I tried to avoid those movements. It wasn’t easy. The moment I felt the pain when reaching for something, I stopped. Luckily it went away without medical intervention. It took a few months though.

I have had a hip problem for over 30 years. At first I was told it was tendonitis and took medications for it. I decreased certain motions but nothing helped. I just dealt with it until recently my hip started making clicking noises. My MRI revealed I had a hip labrum tear. I was told people who had surgical repair had developed arthritis in the hip early. I had no arthritis. Sometimes surgical intervention may not be the best solution. I had a wrong diagnosis initially. Goes to show doctors do not always have answers either. Fortunately, technology today has improved to allow for a more accurate medical diagnosis. We do the best we can with the choices we are given. We owe it to ourselves to be our own advocate. After all we know our pain better than our doctors. Wish you the best, Toni

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@avmcbellar. I had frozen shoulder few years ago, the orthopedic doctor said it could takeas long as a year to hral. Fortunately i know some really good PT and they got it working in a few months. They "defrosted" my shoulder! They don't accept my insurance so I had to pay cash, but they're worth every penny. Now i have problems with my hip. Last December the diagnosis was hip bursitis. I understand it's not something that heal easily either. I'm going to get a referral to ser orthopedic doctor to get a diagnosis and back to my PT again. Do these things ever end????

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@LeeAase

I've had better results by cutting my yogurt making time to 18-24 hours instead of 36. I had gotten a couple of bad batches with the longer time, but since I cut back to under 24 hours I haven't had any problems.

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@LeeAase.. I read that you can use sous vide to make yogurt. Wonder if anyone here has tried it. Both my children have sous vide and they use it for all kind of food, just not yogurt.

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I had a ultra sound guided steroid injection for the arthritis in my hip. The rhuemologist must have erred as my leg jumped off the table during the procedure and since that injection I have unbearable pain. The neurologist believes it also polyneuropathy but haven't had tests done for that. I did have the EKG that shows nerve damage. I am on 2400 mg. of Gabapetine and on a regular basis I am in pain that comes and goes. Is there a cure for nerve damage?

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@LeeAase

I've had better results by cutting my yogurt making time to 18-24 hours instead of 36. I had gotten a couple of bad batches with the longer time, but since I cut back to under 24 hours I haven't had any problems.

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Thanks Lee! I will give it a try on my next batch and try to remember to start checking it at 14 hours just to make sure. I really do think it goes great with fresh fruit as a dessert for my last meal of the day.

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@sunnyflower

@jimhd. Hi. Do you have a pet/service animal? I'm thinking you probably already do, but just in case, I thought I'd ask. I know so many, including a family member, have them and their lives have improved dramatically.
All my best, Sunnyflower

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@sunnyflower

My service dog, Sadie, is my avatar. She's a psychiatric service dog, for depression/anxiety and PTSD. She's my second one.

Jim

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@bustrbrwn22 @sunnyflower @avmcbellar @helennicola @hazelnut

Well, since this discussion is about neuropathy, I'll just say that I wish there were an injection for pn. My wife and I have both had cortisone shots for multiple pains. But I do take a low dose of Prednisone, 10mg, prescribed by my neurologist in hopes that it will slow the progression of sfpn in my feet and ankles, numbness in fingers. I don't think it will have any effect on my AN. When I had my flu shot last week, the pharmacist warned me about risk of infection when taking prednisone. I guess sometimes we have to weigh the risks against the benefits of medications.

Jim

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@hazelnut

I had a ultra sound guided steroid injection for the arthritis in my hip. The rhuemologist must have erred as my leg jumped off the table during the procedure and since that injection I have unbearable pain. The neurologist believes it also polyneuropathy but haven't had tests done for that. I did have the EKG that shows nerve damage. I am on 2400 mg. of Gabapetine and on a regular basis I am in pain that comes and goes. Is there a cure for nerve damage?

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@hazelnut Hi Betty. I'm sorry, but no, there is not a cure for neuropathy. There is hope in managing symptoms which may come from lifestyle change, vitamins and supplements, diet, exercise, cognitive behavioral therapy, physical therapy, etc…
and of course medications.

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