Hello, read this artical from the FDA dated January 30th, 2020, about dangers of Gabapentin, Lyrica and other drugs. I thought it worthy of our attention : https://www.fda.gov/drugs/drug-safety-and-availability/fda-warns-about-serious-breathing-problems-seizure-and-nerve-pain-medicines-gabapentin-neurontin
Warmest regards, Sunnyflower 🙏
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@lorirenee1 You are so sweet Lori! And I think I am the one who is being helped here on Connect. What great therapy, and free to boot!
@jesfactsmon Hank – Yes, I continue to walk as best I can. Some days it isn't worth the pain. The unpredictability of how this disease affects my body is dumbfounding. If I have a couple of calmer days in my legs, then my shoulders, back, arms, hands flare. My legs have days of aching only, and I consider that a win. Walking for me remains a slow, several stops to break, challenge. At best I walk a block and back. Some days are easier than others but, never normal. My legs by all means feel better than last year! I continue to walk and excercise them so hopefully they never get that bad again. Last year, at that time, I was nursing back my B12 levels and that is what I believe is the difference of this year. My legs still have varying degrees of weakness, heaviness, burning, tightness, calf and quad pain, cramping, twitching or aching. Things may come and go by the day, or take weeks to come back. Some things never leave but, flare to varying degrees. The unpredictability makes it hard because I am a hopeful person and if I ever get a day or back to back days of betterment, I secretly think maybe I'm finally healing or am in some kind of remission. Then I'm reminded otherwise. But, maybe it's about a month of feeling better, or a year. Cant put parameters on hope. Thank you for your warmth and concern.
Wishing you and Linda well.
Hi and thanks for your helpful response
The Lyrica made me disoriented.. thought I was having another stroke. Called my oncologist
( treated my NonHodgkins Lymphoma and now my Polycythemia Vera) and he told me it’s not an uncommon side effect of the Lyrica and to stop it
No problems since
I’m making appt with dr who can prescribe the
med marijuana this week
None of my doctors, including my neurologist can prescribe it. Then I have to apply for a card from the state (NJ) before I can fill the prescription. Hope it doesn’t take too long
I hope you get relief and wish I had some special
magic formula to share with you
Awww, that's sweet @irishnanny3, thank you. Same goes for me…neither my neurologist nor my pain management Dr could prescribe so my general practitioner referred me to a prescribing Dr to get certified in NY. It was fairly simple and quick but, a little costly. About $250 for the Dr. and another $250 for the license. Then the product cost which you can shop for sales and may get a new customer discount. I will be interested in your experience, if you care to share. Good luck!
Thanks for the info. I’m going in blind, but anxious to see how it goes
I’ll keep you posted
I started a note last night, but had to stop for some reason, and didn't get back until now.
But I think I'll go to a different, more appropriate group, because it doesn't relate to neuropathy medication. I'm not sure where, but somewhere in the mental health group. I don't mind if everyone in this group reads it, but it's moving pretty far from the reason for this conversation.
@jimhd I'll look for it Jim, thanks.
@jesfactsmon The first psychiatrist I saw gave me the overall label of Major Depressive Disorder, as well as Depressive Bipolar and Atypical Depression. My highs would probably be classified as mild depression by normal people. The two are quite similar.
I've been rating my days on a scale of 1 to 10 at the recommendation of the staff where I self-admitted during my actively suicidal period, 10 being the best day of my life. 4 is preparing to die, I'm not sure how to label 1-3, 5 suicide is somewhat intrusive, 6 it's at the back of my mind, a good day.
I was at 4 for 7 or 8 years, and finally got up to 5 some time after 2010. I thought I'd never reach 6, but I did a few years ago, and I kind of migrate between 5 and 6 now. It's been 5 for a month. My therapist and I have conversations about it, but we don't think I'm at the level where I'm not safe, but I sure do think about it a lot. Life gets too complicated and then overwhelming. I've concluded that 6 is my new 9.
I wrote a rather lengthy message in the depression and anxiety group, responding to a person's recent post, Is depression permanent? I almost always seem to require a lot of sentences to express my thoughts. I should have been asleep long ago because I have to take the car to the shop – again – as early as I can.
@jimhd Ugh, I hope this doesn't mean you won't get to bed until after the car appt. I do know you are kind of a night owl. I get up between 2 and 2:30 am central time and you are often one of the few posting in the neuropathy discussions when I hop onto Connect usually by 3am or so. I responded to your post over in the depression discussion. Your descriptions so far of what you live with are pretty mind boggling to me. I will leave any further responses to you about this over on that other discussion. I really appreciate you Jim for being so open. I have come to appreciate you more generally as well. It's truly amazing how much fondness one develops for others here. Best, Hank
@rwinney Rachel I just sent you a private message. Hank