Living with Neuropathy - Welcome to the group

Sunny, I do not see a specific rheumatology topic for Connect. But I did find these by searching for rheumatology or joints in the search window:

Here is something for bones joints and muscles:
https://connect.mayoclinic.org/group/arthritis-and-joint-conditions-268850/

This one about rheumatoid arthritis:
https://connect.mayoclinic.org/discussion/rheumatoid-arthritis-ra-introduce-yourself-and-meet-others/?pg=12#comment-332812

This one mentions rheumatology but just has 3 posts:
https://connect.mayoclinic.org/discussion/rheumatologicalneurological/?utm_campaign=search

And, if you look at the following web page it does list other (non Mayo Connect) forums if you are interested: https://www.healthline.com/health/rheumatoid-arthritis-forums#Reach-Out

That was as far as I got. Best, Hank

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I tried talking to lawyers, but none of them would take my case unless a doctor(s) would testify that the injection definitely was the cause of my neuropathy. Of course, no doctor will say that it was definitely the reason, even though I felt the neuropathy start immediately after the injection. They just call it "idiopathic", which is what most of us sufferers have been told. Again, be careful and learn as much as you can.

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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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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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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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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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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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