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Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @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?

Interested in more discussions like this? Go to the Neuropathy Support Group.

sunnyflower | @sunnyflower | Nov 14, 2020
In reply to @artscaping "Good morning @lorirenee1, First of all, I want to tell you that I notice your consistent..." + (show)
@artscaping

Good morning @lorirenee1, First of all, I want to tell you that I notice your consistent and very positive support of other members.....not a long tirade....not some automatic reply.......just a genuine acknowledgment of their issues, in words that show compassion, a calm acceptance of self and a respectful focus on what is true for you.

I also note that you have had bad reactions to sulfa.....some time ago. I was given sulfa by a Rheumatologist 20 years ago. I ended up rolling on the floor because of the itching and pain. I ended up in ER where more of my body parts were complaining about the sulfa. I wonder how long one should wait before trying it again if ever.

May you be pain-free and at peace today.
Chris

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Dear Chris,
I read about your reaction to sulfa and I'm very sorry you had to go through that.

I worked in healthcare for 20 years and also had a sulfa rash myself although nothing like you did.

I'm almost positive this was a legitimate allergic reaction and that you should not have this drug again. I think the doctors probably flagged your chart as having an allergy to this drug. They should have.

If I were you I would call the pharmacist at your doctor's office or clinic, and explain exactly what happened to you when you were given the drug in the emergency room. They will either flag your chart as having a sulfa allergy and/or talk to your doctor about it.

Once it is in your chart at your doctor's office, they should also make sure it appears in the hospital chart where this reaction happen to you. This step really isn't necessary because the medical institutions have access to patients charts now online but in my experience they are not always updated so in that case it would be a good idea just to be sure because this was such a huge reaction.

Take good care of yourself and I wish you all the very best!

Many blessings, Sunnyflower

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mayofeb2020 | @mayofeb2020 | Nov 14, 2020

@artscaping @sunnygirl. When my daughter was in college she called in a panic that she had broken out in a rash all over her body. After many q and a, she told me she had gone to the health center bc she was sick and the rash came on after one dose of some medication. I told her to go back there and showed them the rash. Sure enough there was sulfer in the med and she was allergic to this, something we did not know.
It's a great idea to let the doctor and pharmacies know. If you wear a medical bracelet, maybe it would help if you put that allergy on that too. I have recently been put on Xeralto, a blood thinner, and my daughter made a a bracelet with my children's phone numbers and also the info on Xeralto on it. Just a thought.

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bustrbrwn22 | @bustrbrwn22 | Nov 14, 2020
In reply to @helennicola "Hi Chris, my husband developed sciatica after his 2nd back surgery. It was never that bad,..." + (show)
@helennicola

Hi Chris, my husband developed sciatica after his 2nd back surgery. It was never that bad, just would show up randomly for a few minutes and disappear. He decided to see a P/T to try to get rid if it permanently and he feels it has improved but is not that big of a problem compared to the pain he was experiencing prior to his surgery. I’fe seen a John Barns- trained MFR therapist twice for my neck and hip; he is excellent and is the only one to have helped with my neck pain, I will see him at least once again but insurance doesn't cover it and it’s costly. I’ve also been doing some MFR exercises at home and am waiting for John Barns’ book which I ordered from Amazon; the science is very interesting. Stay well, Helen

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@helennicola can I ask what MFR exercises you are doing? Is your husband doing any for his sciatica? Thanks so much.

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2 replies
bustrbrwn22 | @bustrbrwn22 | Nov 14, 2020
In reply to @johnbishop "@bustrbrwn22 @lorirenee1 and others - here is some information from 2015 on Zonisamide but it doesn't..." + (show)
@johnbishop

@bustrbrwn22 @lorirenee1 and others - here is some information from 2015 on Zonisamide but it doesn't mention that it is very effective for pain relief. I would run any alternative treatment by your doctor or a pharmacist to make sure there are no interactions or side effects with medications you are already taking...just my two cents.

Zonisamide for neuropathic pain in adults - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6485502/

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Thanks so much for the NIH info @johnbishop

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lorirenee1 | @lorirenee1 | Nov 14, 2020
In reply to @artscaping "Good morning @lorirenee1, First of all, I want to tell you that I notice your consistent..." + (show)
@artscaping

Good morning @lorirenee1, First of all, I want to tell you that I notice your consistent and very positive support of other members.....not a long tirade....not some automatic reply.......just a genuine acknowledgment of their issues, in words that show compassion, a calm acceptance of self and a respectful focus on what is true for you.

I also note that you have had bad reactions to sulfa.....some time ago. I was given sulfa by a Rheumatologist 20 years ago. I ended up rolling on the floor because of the itching and pain. I ended up in ER where more of my body parts were complaining about the sulfa. I wonder how long one should wait before trying it again if ever.

May you be pain-free and at peace today.
Chris

Jump to this post

@artscaping Well Chris, thanks so much for your kind words to me. I do really listen to people here, and sometimes, it overwhelms me. But I do try to really listen. As far as sulfa drugs, I doubt you or I should ever take them again. When I took them, my entire face was like one huge hive. Even the doctor got alarmed. So no, don't take them! I won't! LoriRenee1

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2 replies
lorirenee1 | @lorirenee1 | Nov 14, 2020
In reply to @artscaping "Hey there Helen, @helennicola. I am so glad you have had good results with your MFR..." + (show)
@artscaping

Hey there Helen, @helennicola. I am so glad you have had good results with your MFR sessions. I haven't revealed this yet.....but I am realizing that my quality of life is deteriorating rather rapidly. Even with medical cannabis for pain control, I find I need more to control the discomfort so that I can jump into living. I never quite got to the very rich THC at 100% that you use for sleep. Even with the 1:1 and my 1:3 tincture, I am spending more time resting and even sleeping.

Only on MFR days is the pain relieved enough for me to sit and play cribbage or take a ride in the countryside. And I know the pandemic fatigue and restrictions have taken their toll. Here is what I want to do.......increase my MFR to 2 sessions a week and reduce the amount of cannabis so I can stay awake until bedtime.

The issue of course is the cost. Medicare does cover bodywork done by OT's when there is a back to work objective. And it follows that supplements will follow the policies of Medicare. And if there is no insurance then here's the plan.......I am completing my Tymlos for osteoporosis in December and that is and has been quite costly. I want to earmark those $$$ to a 2nd MFR session.

Then...I am working on my Santa letter. If you add up all the children, grandchildren, and other family members.....who probably are wondering.....what in the world do we get TuTu?

There could be hope.

I am glad your husband has been able to see improvement in his sciatica. At least...we know where to send these husbands when they need help. Do you still have a cannabis regimen? Anything new to report?

May you have joy today......
Chris

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@artscaping I am sorry you are beginning to be worse with your pain control. Awful, period. Controlling pain is central to my life, and I hate it. Please keep Kratom in back of your mind, and message me if you want info about it. To have concerns with Medicare, medication costs, just increases our burden. Do take care. Love, Lori

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helennicola | @helennicola | Nov 14, 2020
In reply to @bustrbrwn22 "@helennicola can I ask what MFR exercises you are doing? Is your husband doing any for..." + (show)
@bustrbrwn22

@helennicola can I ask what MFR exercises you are doing? Is your husband doing any for his sciatica? Thanks so much.

Jump to this post

The MFR exercises I do at home are to help with my chronic neck pain. I use one of those big inflatable rubber balls and with feet on floor and carefully balanced I lean back with head hanging down and arms and shoulders back with hands placed flat on upper chest. It’s great for stretching the neck and upper shoulder muscles and fascia and also helps breathing. I can do it standing up also.(without the ball!) That is the only MFR exercise I do at home, for my hip problem I see an orthopedic P/T and do 5 different exercises at home. My husband sees a OP/T for his sciatica and incorporates both stretching and resistance exercises at home. There are a lot of good informative videos and articles on line; I am going to try to incorporate more for my neck after my next MFR session. Hope this helps. Helen

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1 reply
lioness | @lioness | Nov 14, 2020

@contentandwell I went to the Dr for an injection and asked about the osteoporosis and the cortisone he said there is very little amount of the cortisone that is wouldnt hurt . I get another injection in 4 months. It did help relieve the pain,not as bad now .

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1 reply
helennicola | @helennicola | Nov 14, 2020
In reply to @bustrbrwn22 "@helennicola can I ask what MFR exercises you are doing? Is your husband doing any for..." + (show)
@bustrbrwn22

@helennicola can I ask what MFR exercises you are doing? Is your husband doing any for his sciatica? Thanks so much.

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bustrbrwn22, sorry but I forgot to address my reply to you about MFR and Sunny, I hope you didn’t catch this! 🙄😁 Helen

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1 reply
bustrbrwn22 | @bustrbrwn22 | Nov 15, 2020
In reply to @helennicola "The MFR exercises I do at home are to help with my chronic neck pain. I..." + (show)
@helennicola

The MFR exercises I do at home are to help with my chronic neck pain. I use one of those big inflatable rubber balls and with feet on floor and carefully balanced I lean back with head hanging down and arms and shoulders back with hands placed flat on upper chest. It’s great for stretching the neck and upper shoulder muscles and fascia and also helps breathing. I can do it standing up also.(without the ball!) That is the only MFR exercise I do at home, for my hip problem I see an orthopedic P/T and do 5 different exercises at home. My husband sees a OP/T for his sciatica and incorporates both stretching and resistance exercises at home. There are a lot of good informative videos and articles on line; I am going to try to incorporate more for my neck after my next MFR session. Hope this helps. Helen

Jump to this post

Thanks so much Helen!

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