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Super Contributor
Posts: 2,007
Registered: ‎04-05-2010

Re: Fibromyalgia Sufferers...A Place to Meet

Madisson, the Tai Chi I take has been specifically modified for people with balance and joint issues so it does differ slightly from what you see online. The thing about Tai Chi is you start at your own level and gradually work up. I started by moving only inches but gradually worked into larger movements. My pain management dr told me it's the fact that Tai Chi is a flowing, non-repetitive exercise that works so well with fibro - too many repetitions of a single movement, no matter now gentle, can cause our muscles to go into spasms. So, in class, we are flowing through 8 different "forms" which end up gently stretching and working every part of our body. I'm having to start from the beginning again, but as you practice Tai Chi, you start gently stepping and stretching a little further. It also is a calming, centering time.

Sounds like you have had some stressful times. Hope things go smoothly so you can enjoy your company. We had our annual family get together over the July 4th weekend, without my sons' help I couldn't have done it, as it was I had to go to my room and rest part of the time.

Hope everyone has a great day and is safe from the heat. The heat index here today is 108!

Respected Contributor
Posts: 3,738
Registered: ‎10-26-2010

Re: Fibromyalgia Sufferers...A Place to Meet

Thanks so much for starting this thread. I find it helpful to discuss things with others going thru the same issues. I was diagnosed years ago, after being diagnosed with Graves Disease. I am having a major flare up now due to an issue with medication. When initially diagnosed it took a while before finding the right medication. I was on Efferor XR for years with very minor side effects. In January our insurance plan changed and I can no longer afford the RX. I asked my doc for something cheaper in the formulary. Turns out that Citalopram has a nasty interaction with my BP med. After 3 days, my BP almost bottomed out, with severe headaches and blurred vision. Since then I have had major joint swelling as well as other issues. I was tested for Lyme...negative and am waiting for the results of a full autoimmune panel. I am exhausted, can't sleep at night due to pain, and have difficulty walking.

I hope those on this thread are able to feel better soon. I know the pain of broken ribs, not good. The up side is that fibromyalgia is now better acknowledged as a real medical issue that affects millions. Hopefully, younger patients will be diagnosed and treated in a timely manner.

Again thank you for starting this thread.

Super Contributor
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Re: Fibromyalgia Sufferers...A Place to Meet

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Frequent Contributor
Posts: 94
Registered: ‎03-09-2010

Re: Fibromyalgia Sufferers...A Place to Meet

Thanks to so many of you that have responded to my earlier post and took time to write to me. Please know how grateful I am.

Liz, I am so very sorry for your situation. You most certainly would benefit from the unconditional love that a sweet dog could offer to you. There are other groups - "Canine Companions for Independence" is one that comes up in my mind. There are so many shelter and rescue groups as well - however, those sweet souls have not been worked with to be considered as medically trained pups. My last 4 dogs have been rescue dogs, 3 Labs and my current smaller guy, a flat-coated retriever mix. I am still working (in a University office - my faculty and students are fabulous), and my Teddy goes to doggie day care during the day. Another genius enterprise!

I am so sorry for those of you that are dealing with such negativity and lack of support from family and "friends". Since I have no family (but did grow up with fibro and arthritis all around) my friends have become family and most of them I have been close to for 30-40 years. Almost as good as canines, they too offer me unconditional love and support. I cherish them in my darkest and foggiest moments. Again, thank you!

PS: I was on Fentanyl patches earlier this year. Perhaps some of you have tried them. I had to pick up the Rx from my MD's office, go to CVS, show my driver's license, and show it again when I picked them up. This could not be called in. Opioid med and considered very powerful. I tried the patches for about 2.5 months. They did not help me one bit. Finally I contacted my MD and told her I wanted to go off of them and back on what I was taking before. Fine with her and she added another capsule of Lyrica instead which totals 2 in the AM and 2 in the PM.

Super Contributor
Posts: 325
Registered: ‎06-09-2014

Re: Fibromyalgia Sufferers...A Place to Meet

On 7/23/2014 grandma r said:

Thanks so much for starting this thread. I find it helpful to discuss things with others going thru the same issues. I was diagnosed years ago, after being diagnosed with Graves Disease. I am having a major flare up now due to an issue with medication. When initially diagnosed it took a while before finding the right medication. I was on Efferor XR for years with very minor side effects. In January our insurance plan changed and I can no longer afford the RX. I asked my doc for something cheaper in the formulary. Turns out that Citalopram has a nasty interaction with my BP med. After 3 days, my BP almost bottomed out, with severe headaches and blurred vision. Since then I have had major joint swelling as well as other issues. I was tested for Lyme...negative and am waiting for the results of a full autoimmune panel. I am exhausted, can't sleep at night due to pain, and have difficulty walking.

I hope those on this thread are able to feel better soon. I know the pain of broken ribs, not good. The up side is that fibromyalgia is now better acknowledged as a real medical issue that affects millions. Hopefully, younger patients will be diagnosed and treated in a timely manner.

Again thank you for starting this thread.

I remember when , too! It was considered more in the head, not a real illness. At least now it is recognized as an illness and hopefully more will be learned about it. I first went to a rheumatologist in 1981 and he couldn't pinpoint anything so he said it might be fibro but I didn't have the trigger points. I did show a mildly positive ANA and about a year later he decide it was lupus...wrong! I do have the trigger points now...but I am no where near as ill as most of you ladies are and I am grateful. But I hope all of you can find a treatment regimen that really works for you.
Respected Contributor
Posts: 2,809
Registered: ‎03-10-2010

Re: Fibromyalgia Sufferers...A Place to Meet

On 7/22/2014 addiegal said: Madisson, I was on 2700 mg. gabapentin for a couple or so years...I did get some side effects that were troubling but when I weaned off the neuropathy I'd had was gone! And I was on Lexapro along with the gabapentin and the tapering off the Lexapro was the hardest of all! So, don't give up, just give yourself time between tapers to adjust.

This troubles me, as I am on both Lexapro and gabapentin, 2400 mg a day. The thing is, I had chemo, 12 sessions, last year, and got neuropathy, which I still have, supposedly from the chemo. I wonder if I started cutting down on the gabapentin, it would help with it? I can't go off Lexapro, for sure.

Any advice or comments would be appreciated.

mm

"Cats are like potato chips, you can never have just one".
Super Contributor
Posts: 325
Registered: ‎06-09-2014

Re: Fibromyalgia Sufferers...A Place to Meet

I had neuropathy and that is why I was on the Gabapentin and I was put on the Lexapro about that time as well...if you still have the neuropathy I would hestate to reduce the gabapentin. My neuropathy was gone and didn't return off the medicine. I no longer needed the Lexapro either. But if you still have problems you shouldn't change your medicines.
Respected Contributor
Posts: 2,809
Registered: ‎03-10-2010

Re: Fibromyalgia Sufferers...A Place to Meet

On 7/23/2014 addiegal said: I had neuropathy and that is why I was on the Gabapentin and I was put on the Lexapro about that time as well...if you still have the neuropathy I would hestate to reduce the gabapentin. My neuropathy was gone and didn't return off the medicine. I no longer needed the Lexapro either. But if you still have problems you shouldn't change your medicines.

addiegal, thank you. I am glad to hear your neuropathy has gone, Smile you are blessed for sure. I have been on Lexapro for a long time, and don't now how I would do off of it either. Today is not a good day at all, hopefully tomorrow will be better. Take care.

mm

"Cats are like potato chips, you can never have just one".
Super Contributor
Posts: 299
Registered: ‎01-30-2011

Re: Fibromyalgia Sufferers...A Place to Meet

Hi Everyone! There has been a lot of activity here. I am going to read through everything.

Madisson, I did see that you had some stuff happen all at once...that is the way it is right? Everything at once. I am going to try the exercises before I get of bed. I have the dentist tomorrow late morning and I am already dreading getting ready to go. I just have to be fitted with a night guard (my old one broke), and I am not afraid of the dentist. It is just so hard to deal with anything early, unless I have Advil in me. And I am really not supposed to take Advil with my IBS, GERD.

addiegal...can I ask you what side effects you had with Gabapentin. I was on it a long time ago, and really am thinking of revisiting it. Thanks!

OK...going to read all the posts I missed.

Michelle

Super Contributor
Posts: 299
Registered: ‎01-30-2011

Re: Fibromyalgia Sufferers...A Place to Meet

Okiebug.. I agree with Madisson, your Dr.'s were more than inappropriate. But I have been through similar situations when my daughter had Lyme. They thought she was faking. I finally found some amazing Dr.'s that dealt with it the right way. You deserve the right treatment.

The Tai Chi sounds so good. I don't even know if there is anything like that here. When I was in my 30's into my early 40's I took Jazzercise. Obviously that ship has sailed. It is still here but no way could I get through 1 minute of it! I go on the stepper a few times a week only for about 10 minutes. I am trying to build up.

grandma r..You have really been through the ringer. Drug interactions can be so scary. I am glad they figured out what it was. I was on Effexor for depression and I gained so much weight. I was weaned off of it and I had such a bad reacion (mentally) going off of it. I mean I was cranky on steroids and very emotional. I am now on Prozac but truthfully, I am wanting to go off of it after reading from Madisson that it causes breast enlargement. And.... I really don't know how much it is helping. I am going to talk to my dr about something for my fibro pain. I am so sorry that you are having pain and cannot sleep. Sleep is kind of my escape.

I was JUST diagnosed with Fibro. Yes, we are lucky that it is a real thing recognized by Dr.'s i just need the right treatment. Please let us know the results of your testing and what they can do for you.

Michelle