Chronic Pain members - Welcome, please introduce yourself

Posted by Kelsey Mohring @kelseydm, Apr 27, 2016

Welcome to the new Chronic Pain group.

I’m Kelsey and I’m the moderator of the group. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Why not take a minute and introduce yourself.

@elkcg

Hi my name is Laura and I’ve lived with chronic pain since 2002. I have small fiber neuropathy, fibromyalgia, PTSD, and the list goes on and on! I’ve tried all sorts of medicines and treatments. Before I got hurt I only weighted 150 and now I’m up to 270 and I’m thinking of getting gastric sleeve surgery. I’m so tired of being in pain everyday

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Hello, Maxine here. amongst all my problems I also have polymyalgia and as you say it is like having the flu because it attacks all the muscles and nerves and leaves you feeling helpless. after I got on a prednisone regime and now maintain with 5mg. a day. I have lived with chronic pain a long time from different occasions. my cervical spine is fused C2,3,4,5,6,7,with t1. a result of being rear ended. then I have l5 screws and 3 plates. Next got hurt lifting a patient and that resulted in lumbar fusion of s2,3,4,5. fusions are not so bad but then we age and get arthritis and scar tissue etc. I only take ultram but the muscle relaxer at times gives relief {stelizine] by itself, I use a heating pad when things are worse and ice when needed. My pain radiates in my legs but I have found that no matter where it is, it is pain and get little help from Drs. so what we must do is accept that we will be like this as long as we live and move on from there. My best relief is from smoking Marijuana. I also am a Christian and prayer is our power. I enclose love for every one of my fellow chronic pain pals, xoxo

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@elkcg

Hi my name is Laura and I’ve lived with chronic pain since 2002. I have small fiber neuropathy, fibromyalgia, PTSD, and the list goes on and on! I’ve tried all sorts of medicines and treatments. Before I got hurt I only weighted 150 and now I’m up to 270 and I’m thinking of getting gastric sleeve surgery. I’m so tired of being in pain everyday

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Hello Maxine. If you don’t mind sharing, when you say polymyalgia, does that mean polymyalgia rheumatica?

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@mikween

Has anyone ever heard of The Institute for Advanced Reconstruction in New Jersey? They are claiming. that they can fix people with foot drop if it has not been to long. I would appreciates anyone’s input. Thanks

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@sandytoes14, I use those sites also but they are not always reliable I have found. I picked out an orthopedic doctor who was very well rated when I had a knee replacement a few years back and that knee bothers me terribly. I discovered last year that the knee he used is a 30 year old knee! Let’s face it, there have been many improvements since then but apparently he knows that knee and sticks with it. When I went back to him he did nothing for me.
Also, I think you need to make sure some of the reviews are recent. I put a 5 star review on Vitals of my PCP a few years back but since then he has changed, I believe he is burned out. I wonder if I can get rid of that review somehow now. It is definitely no longer accurate.
JK

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@elkcg

Hi my name is Laura and I’ve lived with chronic pain since 2002. I have small fiber neuropathy, fibromyalgia, PTSD, and the list goes on and on! I’ve tried all sorts of medicines and treatments. Before I got hurt I only weighted 150 and now I’m up to 270 and I’m thinking of getting gastric sleeve surgery. I’m so tired of being in pain everyday

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@katemn I too know someone who put a “gofundme” up on facebook but I wonder just how this works. I have no idea what kind of success they have had in getting funds but I can’t help but wonder what happens to that money if the person does not get a transplant? Also it was put up before they even knew if they were accepted as a candidate for transplant and before they knew what their insurance would pay. I am also a bit leery because I have met this woman, she’s a friend of a friend, and her attitude is not very good. She is not doing anything to get in better shape, and she intends to resume drinking after she gets a transplant, assuming she does get a transplant. I don’t mean drinking loads, but drinking socially, she mentioned having pina coladas.
I am very ambiguous about contributing to her “gofundme” due to all of this.
JK

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@elkcg

Hi my name is Laura and I’ve lived with chronic pain since 2002. I have small fiber neuropathy, fibromyalgia, PTSD, and the list goes on and on! I’ve tried all sorts of medicines and treatments. Before I got hurt I only weighted 150 and now I’m up to 270 and I’m thinking of getting gastric sleeve surgery. I’m so tired of being in pain everyday

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Good luck. I have been cheated on Go fund me. Fortunately, not much. Go with your heart. Call that person and find
out more if you really want to help someone and maybe a contract is necessary.

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@elkcg

Hi my name is Laura and I’ve lived with chronic pain since 2002. I have small fiber neuropathy, fibromyalgia, PTSD, and the list goes on and on! I’ve tried all sorts of medicines and treatments. Before I got hurt I only weighted 150 and now I’m up to 270 and I’m thinking of getting gastric sleeve surgery. I’m so tired of being in pain everyday

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yes but no headache. I was shocked because of inability to do even as much as pull the blankets off to get up.

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I’m Betty. I have chronic Migraines. I am very interested in finding out how others cope with their migraines.

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@bwendland

I’m Betty. I have chronic Migraines. I am very interested in finding out how others cope with their migraines.

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Have you tried Botox?

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@bwendland

I’m Betty. I have chronic Migraines. I am very interested in finding out how others cope with their migraines.

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I currently get botox every 3 months and it has helped some. Although it hasn’t decreased the frequency much, it has decreased the severity of my migraines quite a bit. So that’s a plus. I’m currently taking atenonol and zonisamide daily as preventatives. I’ve also taken gabapentin before as a preventative. Weather changes bring them on as do NutraSweet. I can do something about one, not the other. I don’t do much caffeine. I’ve had a migraine 7 out of the last 10 days and usually wake up with one. Any other advice?

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@bwendland

I’m Betty. I have chronic Migraines. I am very interested in finding out how others cope with their migraines.

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Hello, I also get botox every three months and it does help, but not for the full three months. The only artificial sweetener I can use is Stevia. Weather changes are deadly for me as it triggers both migraines and TN. I also use very little caffeine. I suggest avoiding strong odors, even perfume, but you probably know that. I have never heard of the two preventatives, but will check with my doctor about them. Have you tried using Biotene toothpaste and mouthwash? The kind that comes in the green bottles are better than the Biotene that comes in blue bottles. Any other suggestions?

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@bwendland

I’m Betty. I have chronic Migraines. I am very interested in finding out how others cope with their migraines.

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For everyone talking about dealing with migraines, you may be interested in joining this discussion:
– Migraines https://connect.mayoclinic.org/discussion/migraines-27b15e/

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@bwendland

I’m Betty. I have chronic Migraines. I am very interested in finding out how others cope with their migraines.

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@bwendland Does caffeine definitely trigger for you? I found coffee helped mine which I understand is common. If I didn’t have coffee in the morning I would often get a headache, basically a mild migraine. My severe migraines definitely had a hormonal connection. I always thought so and then after menopause they stopped so it definitely was so.
Beta blockers were not known to help migraines when I was seeking a solution. I heard at some point that people who were on them for other things found they helped migraines but I did not know then if they would prescribe them for migraine specifically.
I must have been the only woman ever to welcome menopause. Hot flashes were better than migraines.
JK

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@bwendland

I’m Betty. I have chronic Migraines. I am very interested in finding out how others cope with their migraines.

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@lauren123 I didn’t realize that about artificial sweeteners, and as I said in a prior message caffeine helped me. Weather and smells sure effected me too though. I have read that sour cream can be a trigger too.
Biotene helps with your migraines? I am collecting information to pass on to my daughter. I have suggested to her that she might want to participate on these boards but she is so busy with her work that she doesn’t use her computer much for non-work related things.
JK

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@bwendland

I’m Betty. I have chronic Migraines. I am very interested in finding out how others cope with their migraines.

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Caffeine does not trigger migraines for me that I know of. I don’t care for coffee, never have. I rarely drink a cola. I do drink black tea occasionally, but not enough that I think the lack of caffeine is the cause of my migraines in the am.
My Dr prescribed a beta blocker many years ago as a preventative. My blood pressure has never been an issue. Going through menopause did not make my migraines any better (or worse).

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@bwendland

I’m Betty. I have chronic Migraines. I am very interested in finding out how others cope with their migraines.

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Good to know about sour cream as something to avoid; although I don’t use it very often. Thanks for the Biotene tip. Worth a try. Haven’t heard that before.

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