Living with Neuropathy - Welcome to the group

@catharbert

This is off the current topic completely but I read through your previous posts just now and I ran across one from 8/28 in which you say:

"My husband has terrible migraines caused by weather, usually thunderstorms and other than strong narcotic medicines there no treatment has been offered"

My wife has been getting these terrible headaches which she believes are caused by changes in barometric pressure, like when, for example, a storm front comes in. But often even more subtle BP changes. I felt compelled to tell you about something that has helped her quite a bit. I found something called Shifa tea out of New York City that has helped her a lot. Here is the Amazon link:

She brews a batch of it in a pot and it has a strong odor. She only puts a couple ounces of the brew into a cup of hot water or else it's too strong. I don't know if this will help your husband, but who knows? Best to you! Hank

I have had huge weight gains with both Lyrica and even more with Seroquel (30 pounds in 1 year). I have always been a size 0 or 2 because I am small boned but this weight is not coming off. I am wearing XXL clothes and feel so disgusted in myself. I am so sorry to waste your time on such a trivial issue but really seriously think before taking these meds

Hi Catcando (did I get that right?),
I am very concerned to learn that Gaba can cause osteoporosis!! I have had "severe" osteo for years w/ 3 pelvic, rib and smaller spontaneous fractures over the years (daily Prednisone for 20+years and my Rheumatologist didn't tell my that Pred could do this-unbelievable!) but couldn't bring myself to take the toxic meds for it.

Yes, I have tried Lyrica but thought the side-effects were worse and wasn't sure if it helped me as much. I can't believe I wasn't told about this and that my neurologist put me on it!!

I really hope Lyrica works well for you and that there are no unwanted side-effects.

Keep us posted.
Warmest regards, Sunnyflower. 😊

I just read that there are a few caveats associated with gaba and osteoarthritis: if you are also taking the drug Zometa and you have a Multiple Myloma you may experience that side effect. Sunny, I would add that regarding osteoarthritis that the usual prescribed drugs can cause joint pain (which I experienced and stopped taking) and bone fragility which then can cause fractures! Unless these drugs have been improved over the past years I would do some research. Just FYI. Wishing you the best, Helen

Hi all I just heard bout this forum I’m new. I was diagnosed with CRPS type 2 I get hives on left side of body do to a work injury , to my left hip lower back. Long story felt a take my breathe away pain in left hip/ lower back I fell onto big rocks without bracing my fall, company dr kind of blew my hip pain off said it was my back muscles had x ray of back called it a lumbar strain contusion, allowed to work 3 monthes entire time complaining of hip pain they did bone scan and closed mri finally that showed possible fractured hip starting to heal and hip labrum tear. Few days after injury I was getting raised hives on my hip that burned couldn’t touch them , asked company dr. Said no clue. Finally after being pissed I got my own drs had labrum surgery which lead to hives coming two days after from my neck to my ankles. Surgeon saw I explained the pain to touch lots of other issues I’ve never had in 47 years my left ankle swelled no reason etc. all my 4 treating drs that are amazing all agree , of course the work dr that’s hired says he doesn’t think I do. ( save ins. Money) is why says I don’t hit the Budapest criteria which all my drs use and I have 3/4 of all .. I’m getting Charlie horses so bad I’m in tears has anyone had this? From my hip to toes on left side. My pains a constant 5 when it’s real bad a 15-20 I’m in PA and on medical marijuana, 2400 mgs of gabapentin and flexerall. And Suboxen which is very interesting, was on pain meds years and years ago. Never did drugs I didn’t like the opiates and needed to ween down they prescribed Suboxen which also helped with the pain without the opiate side effects, I stopped the subs 5 days prior to surgery, when my surgeon saw the hives after surgery off the subs he pulled up a power point and said I knew I saw this in the crps power point, one of the Medications in the Suboxen helps desensitize the skin in patients that get the hives from the crps / pain they upped to 3 a day and it helps keep hives at bay! Love that I found this. Love to chat with anyone that has similar issues!!

Hi Hank, I learned something new today! I get headaches because of my healing brain. Thankfully, the occurrence has decreased through the years. The headaches started at twice per week and now I am down to monthly. A bag of ice was my only known remedy after many different attempts. Thank you to you and Linda for the tea link. I will give it a shot. Does she drink it daily or only when she suffers a headache? I am glad you are an advocate for yourself and Linda to do all the research in finding answers. I will ask you for any advice through your experiences. I feel I have many friends through Connect and am fortunate to have met everyone. I will continue to offer any helpful advice through our wonderful avenue of technology. Wish you both well! Toni

Hi I posted in the crps forum ( I think ) how do I know if someone responded? Thanks. Mfmteam

@mfmteam, Welcome to Mayo Clinic Connect. Actually you posted in this discussion - Living with Neuropathy - Welcome to the group. If you scroll up from this post you will see your first post of 2 hours ago. I think the discussion you are looking for is here:

CRPS - anyone suffering with complex regional pain syndrome: https://connect.mayoclinic.org/discussion/crps-anyone-suffering-with-chronic-repetative-pain-syndrome/

Here's where you will you will meet other members dealing with CRPS and what helps them.

Thank you so much. Now do I have to repost there to ?

Oh no! I'm so sorry about your situation! I knew Gabapentin can cause swelling but didn't know the rest..
Something that matters to you is not trival at all! A very wise therapist once told me that I should never minimize my pain /struggles/situation, etc. She said that is self-defeating and to honor our feelings.

For me being a woman of faith, I try to keep my focus on the One in control of my circumstances instead of my circumstances. To lay it at God's feet and ask Him to help me. This really does help me.

I too struggle with weight. I have lost 200#. My birth size was a O or 2 and my parents and grandparents had me on diets since about age 5!!

I have lost 80-90#, 4 times but this last time have kept it off. I keep fluctuating 5-7# and it takes me literally months to get it off!

I pray you will feel MUCH better about yourself and not beat yourself up anymore.

Take extra special care of yourself and know we are here for you.

Fondly, Sunnyflower. 🤗