Want to talk with others. Have you found relief from CRPS?

Posted by mam14 @mam14, Feb 4, 2019

I was diagnosed with complex regional pain syndrome a year ago. It has since spread and I am experiencing a decline in my health at an alarming rate. I am hoping to talk to others that may have found relief.

@mam14

One of my doctors advised the stimulator but I haven't agreed yet. My health issues began with a bladder sling. What was involved in putting that in?

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Renee again, stimulator wasn't bad. But expensive!!! Got really lucky with a great doctor who helped me with the cost. It's a in and out surgery, one day. The leads go in your spine, depending on where u needs the stimulation. Arms or legs. Then there is a generator in your butt, lol… it sends the signals to your spine. U control it with a ipod. I'm almost at the year mark and u just get used to it. Sometimes I still get healing pains in my back, but I'm glad I did it!

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@rsnowflake

Hi things are up and down all the time, but I try to keep going, but sometimes my body just doesn't feel like it. I'm sure u understand how that is. I looking into going to a specialist maybe in new York, I live in Philadelphia, but there are only a few people who even know what crps is… and with my other issues I feel ove gone as far as I can here with doctors. Thanks for asking how I am, usually people r afraid to ask…lol. How are you?

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I am going to Birmingham this weekend for an appointment with my neurologist Monday. I hope that he has some suggestions. I'm drained. I feel like everyday I have to push myself so hard to get up and move. I will look up Hashimoto. I don't know anything about it.

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@rsnowflake

Just wrote u but I know the feeling. I have chronic hives, I am bipolar, and i have Hashimoto's disease, which is a autoimmune thyroid disorder. I take 14 prescriptions a day. And go in once a month for an infusion to keep the hives down. I'm a mess.

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That's a lot of medicine.

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@sandytoes14 I tried the Fibro Malic and had no change with it. I know @lioness is helped by taking it. Also ginger makes my pain worse. Interesting how we are all so different. I am glad to hear the FibroMalic has helped.

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@mam14

That's a lot of medicine.

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Trust me I know…..but I have a wonderful daughter who depends on me, but she's great with all the medical stuff. My husband's amazing I've made it through and I will continue to do so…nothing will make me give up trying something new.

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@mam14

I am going to Birmingham this weekend for an appointment with my neurologist Monday. I hope that he has some suggestions. I'm drained. I feel like everyday I have to push myself so hard to get up and move. I will look up Hashimoto. I don't know anything about it.

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Best luck on Monday. I hope you have a wonderful doctor to help and support you. Don't give up, just keep pushing on. It's horrible I know, but know your not alone!! And many others I've talked with feel the same way. Sometimes crazy, cause people don't believe you or sometimes u r even in 2 much pain to complain, I do that a lot! Keep a smile on your face. Renee

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CBD Daily. It’s a cream that helps me.

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@rsnowflake

Just wrote u but I know the feeling. I have chronic hives, I am bipolar, and i have Hashimoto's disease, which is a autoimmune thyroid disorder. I take 14 prescriptions a day. And go in once a month for an infusion to keep the hives down. I'm a mess.

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I too have hives.

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@cm49ers

I too have hives.

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Do you know what they r from?

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@mam14

Thank you Renee. I am Mary Ann. I am about to walk into an optometrists office. I wear glasses but my vision is so bad sometimes. Do you have trouble with your eyes? It is painful to cry and sometimes my vision is so blurry. Some days I have a lot of trouble reading.

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I also have trouble with my vision. I have had CRPS for just about 20 years. I have visual disturbances – see black and white lines in somewhat of a wavy pattern. Reading is also difficult but I also have corneal dystrophy and cataracts. The blurriness is most disturbing to me. I am taking CDB capsules called Green Mountain, made in Vermont. I stopped taking them for a while but have recently started up again. I was taking them at night but it seemed to hinder my sleep so now I am taking them twice during the day. I am looking forward to improvement.

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@mam14

I am going to Birmingham this weekend for an appointment with my neurologist Monday. I hope that he has some suggestions. I'm drained. I feel like everyday I have to push myself so hard to get up and move. I will look up Hashimoto. I don't know anything about it.

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I see a marvelous pain management doctor. He's been taking great care of me. This week I am having radio frequency ablation on my occipital nerve.The last one gave me great relief for almost six months. Once workers' comp approves I will have rfas on my low back. It's been two years since I had my last ones. That''s great relief. I had a second spinal cord stimulator implanted this past summer. The first was done in 2012 and the newer model is far more useful for me. I have CRPS in both feet, left knee, and left butt.

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@barbbie

I see a marvelous pain management doctor. He's been taking great care of me. This week I am having radio frequency ablation on my occipital nerve.The last one gave me great relief for almost six months. Once workers' comp approves I will have rfas on my low back. It's been two years since I had my last ones. That''s great relief. I had a second spinal cord stimulator implanted this past summer. The first was done in 2012 and the newer model is far more useful for me. I have CRPS in both feet, left knee, and left butt.

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I'm sorry to hear this. I can't imagine 20 years of this. I'm glad that you have found help. Where do you live?

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