1. < Fibromyalgia

Fibromyalgia pain: Let's connect

Posted by clownscrytoo @clownscrytoo, Oct 22, 2016

Is there anyone here that suffers from fibro? I had the 'tender spot test' several years ago and I had 17 out of the 18. I try my hardest to get through the pain with my 4 hydrocodone/acetaminaphine pills a day, Tiger Balm rubbed into areas that are the worst, light exercises, and distracting myself with hobbies or chores, etc; but there are many occasions where none of that helps and I spend most of the day holding down the couch, getting up about 30-45 minutes after that, walking/standing around the house for 15-20 minutes, or sitting for about 15-30 min. I do not drive and my husband works 6 days a week, overtime almost every day, so I'm alone a lot. my wonderful husband is very supportive and I am very grateful for that, but my only other friends are online, out of state, and I will probably never even get to meet them. when extreme pain takes over, my depression takes over and it is so difficult to find hope. does anyone have tips for fibro, whether diet or over-the-counter meds (I've tried them all, I think), or anything, besides hobbies and such? I've tried every over-the-counter med, and the Tiger Balm does cover some of what the pain pill doesn't help, but I'm hoping one of our members might have some knowledge that could help. I'd really appreciate it.
hugz,
Clownscrytoo

Interested in more discussions like this? Go to the Fibromyalgia Support Group.

lioness | @lioness | Feb 8, 2018
In reply to @oregongirl "Parus, I have RA and I was also diagnosed with Fibro. I am presently see my..." + (show)
@oregongirl

Parus, I have RA and I was also diagnosed with Fibro. I am presently see my doctors at the University of Texas Medical
center My doctor said I do not have Fibro I never thought to ask her - how do you know that? What is it they test to show that you have Fibro. I thought my RA had calmed down after 7 weeks of Methotrexate. But, I was SO Sick. I could not even eat. Everything came up. Even Liquid. So now I am on the Shots once a week. I start my Infusions next week. I am nervous about that Never having done the Infusions andI don't know what to expect. I was feeling so good and thought I had gotten the med into my body and then WALLA, pain came back. Today I have a headache. I feel so guilty as I cannot even clean the house. I usually do a bit here and there for about 15 minutes. I guess I should be thankful. I am sure there are many RA patients who cannot get up at all. Parus, I guess this is our life as long as we live.

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I get hot spells, my body feels like it's on fire at times and I don't have RA I was tested for it but I do have fibro so If say this is the culprit.Cool of with water is all I do

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Texas Freedom | @oregongirl | Feb 8, 2018
In reply to @oregongirl "Parus, I have RA and I was also diagnosed with Fibro. I am presently see my..." + (show)
@oregongirl

Parus, I have RA and I was also diagnosed with Fibro. I am presently see my doctors at the University of Texas Medical
center My doctor said I do not have Fibro I never thought to ask her - how do you know that? What is it they test to show that you have Fibro. I thought my RA had calmed down after 7 weeks of Methotrexate. But, I was SO Sick. I could not even eat. Everything came up. Even Liquid. So now I am on the Shots once a week. I start my Infusions next week. I am nervous about that Never having done the Infusions andI don't know what to expect. I was feeling so good and thought I had gotten the med into my body and then WALLA, pain came back. Today I have a headache. I feel so guilty as I cannot even clean the house. I usually do a bit here and there for about 15 minutes. I guess I should be thankful. I am sure there are many RA patients who cannot get up at all. Parus, I guess this is our life as long as we live.

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Be careful. I was diagnosed with fibro by a doctor in Palm Springs. Soon the RA showed up.

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Texas Freedom | @oregongirl | Feb 8, 2018
In reply to @sandytoes14 "I was diagnosed in 2012 with Fibro. Over the years I have been on different prescriptions...." + (show)
@sandytoes14

I was diagnosed in 2012 with Fibro. Over the years I have been on different prescriptions. For a while now I have been taking 60 mg Cymbalta and 150 mg Lyrica. It works well to help with most of the pain but of course I have flare ups, especially when the weather turns. Lately I have been suffering from the dreaded Fibro Fog. It gets so bad that I want to cry. I get frustrated when I talk and can't think of what I want to say. Sometimes I even lose my train of thought mid sentence. I don't know how to describe the feeling other than my thoughts are no longer clear but like I have stepped into a cloud. A few years ago I had a complete neurological workup. The only thing that was shown were tremors.
Do you feel like this? What do you do when this happens?

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Yesterday s AO came in for infusion therapy. So it is treatable

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megh | @megh | Feb 8, 2018

CBD BALM..WE use a lot in oregon.

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Parus | @parus | Feb 10, 2018

Greetings once again fibro folks. I have wanted to be a part of something...Um. this is not what I had in mind. Nice to know I can belong some where even if it is painful. Barometer is dropping as am I.
It is what it is and there are no miracle cures. The best we can do is encourage one another and be kind to ourselves.

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jmmb | @jmmb | Feb 11, 2018

Hi @parus and @oregongirl I was just going to post a question and saw your posts. It is nice to belong somewhere, even though this is not what any of us wanted but I hear you. Also the brain fog. I have that a lot as well. I think it is also part of my Chronic Fatigue. My mom had dementia and my two children and I cared for her and she lived with us for awhile and she passed from a stroke. She still knew us and all was not that bad yet, but my kids saw it and it was heartbreaking. I am afraid sometimes, is it hereditary, am I getting it??? I don't want my kids thinking it. They say sometimes omg mom your just like grandma joking, but .....I know it is "brain fog". I am exhausted all the time. Well this is what I was going to post so if anyone can help me that would be great.
Is anyone taking Savella for fibromyalgia? I heard that worked well with fatigue. Today is the first day I am taking it. I am weaning off the Cymbalta. I have been on Cymbalta for years and I think my body is immune to it now. I am extremely tired and achy. I have other issues. I have Chronic Fatigue, that is why I started the Cymbalta. I was diagnosed about 23 years ago. I had my first child and had to do everything, got sick, mono, Epstein bar then had to quit my job. Went to university where they were doing research on CFS which was great because they tested me for everything possible and free, but wasn’t getting help. Did a few trial meds but didn’t know if placebo…..so mom said no more and got a dr. and Cymbalta was key. I got better, it went into ‘remission’ I was able to even have a second child. Wasn’t working though, but a few years later returned to work. Then out of the blue diagnosed with MALS, my SMA and celiac arteries were narrowed from being encased by diaphragm fibers, blah blah, basicly it was smushing the arteries. Well major surgery, hospital for 7 days, on disability now. Can’t recoup….the CFS back. I did also have major family stresses during this time which did not help at all.
So question is anyone taking SAVELLA and then the dosage is one in morning and one at night. I thought that odd since it is suppose to help keep you awake. Can anyone tell me anything about that? I will ask my dr as well but sometimes better to hear from people actually using it.
Thank you and good luck to everyone suffering with fatigue, it makes everything magnified even worse I think.

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4 replies
Texas Freedom | @oregongirl | Feb 11, 2018
In reply to @oregongirl "Sandytoes, YES brain fog also happens with RA. I have noticed it more often lately. I..." + (show)
@oregongirl

Sandytoes, YES brain fog also happens with RA. I have noticed it more often lately. I don't want my kids thinking I am having difficulties that reflect elderly brain diseases. I wonder how many Fibro and RA patients have been diagnosed wrongly and they are prisoners of the nursing homes. How sad.

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I don't want my kids even wondering if I am loosing my memory. Maybe the cure for dementia is the opposite of RA. Whatever that is..

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lioness | @lioness | Feb 11, 2018
In reply to @jmmb "Hi @parus and @oregongirl I was just going to post a question and saw your posts...." + (show)
@jmmb

Hi @parus and @oregongirl I was just going to post a question and saw your posts. It is nice to belong somewhere, even though this is not what any of us wanted but I hear you. Also the brain fog. I have that a lot as well. I think it is also part of my Chronic Fatigue. My mom had dementia and my two children and I cared for her and she lived with us for awhile and she passed from a stroke. She still knew us and all was not that bad yet, but my kids saw it and it was heartbreaking. I am afraid sometimes, is it hereditary, am I getting it??? I don't want my kids thinking it. They say sometimes omg mom your just like grandma joking, but .....I know it is "brain fog". I am exhausted all the time. Well this is what I was going to post so if anyone can help me that would be great.
Is anyone taking Savella for fibromyalgia? I heard that worked well with fatigue. Today is the first day I am taking it. I am weaning off the Cymbalta. I have been on Cymbalta for years and I think my body is immune to it now. I am extremely tired and achy. I have other issues. I have Chronic Fatigue, that is why I started the Cymbalta. I was diagnosed about 23 years ago. I had my first child and had to do everything, got sick, mono, Epstein bar then had to quit my job. Went to university where they were doing research on CFS which was great because they tested me for everything possible and free, but wasn’t getting help. Did a few trial meds but didn’t know if placebo…..so mom said no more and got a dr. and Cymbalta was key. I got better, it went into ‘remission’ I was able to even have a second child. Wasn’t working though, but a few years later returned to work. Then out of the blue diagnosed with MALS, my SMA and celiac arteries were narrowed from being encased by diaphragm fibers, blah blah, basicly it was smushing the arteries. Well major surgery, hospital for 7 days, on disability now. Can’t recoup….the CFS back. I did also have major family stresses during this time which did not help at all.
So question is anyone taking SAVELLA and then the dosage is one in morning and one at night. I thought that odd since it is suppose to help keep you awake. Can anyone tell me anything about that? I will ask my dr as well but sometimes better to hear from people actually using it.
Thank you and good luck to everyone suffering with fatigue, it makes everything magnified even worse I think.

Jump to this post

I have symptoms today of achy muscles all over ,fatigue Is also lie to know about Savella?

REPLY
jmmb | @jmmb | Feb 11, 2018

@lioness I heard about it , if I remember correctly from a Mayo newsletter I get in my email. It was a short little article on the med and how it has been helping people with fibromyalgia and fatigue, and people with CFS. I asked my dr about it and she knew right away. She said it was in the same class as the Cymbalta. I have been taking that for years and it did help, but I wanted to try this since I am not sure if the Cymbalta is helping anymore. Today is day 1 of starter pack.....

REPLY
grandmaR | @grandmar | Feb 11, 2018
In reply to @jmmb "Hi @parus and @oregongirl I was just going to post a question and saw your posts...." + (show)
@jmmb

Hi @parus and @oregongirl I was just going to post a question and saw your posts. It is nice to belong somewhere, even though this is not what any of us wanted but I hear you. Also the brain fog. I have that a lot as well. I think it is also part of my Chronic Fatigue. My mom had dementia and my two children and I cared for her and she lived with us for awhile and she passed from a stroke. She still knew us and all was not that bad yet, but my kids saw it and it was heartbreaking. I am afraid sometimes, is it hereditary, am I getting it??? I don't want my kids thinking it. They say sometimes omg mom your just like grandma joking, but .....I know it is "brain fog". I am exhausted all the time. Well this is what I was going to post so if anyone can help me that would be great.
Is anyone taking Savella for fibromyalgia? I heard that worked well with fatigue. Today is the first day I am taking it. I am weaning off the Cymbalta. I have been on Cymbalta for years and I think my body is immune to it now. I am extremely tired and achy. I have other issues. I have Chronic Fatigue, that is why I started the Cymbalta. I was diagnosed about 23 years ago. I had my first child and had to do everything, got sick, mono, Epstein bar then had to quit my job. Went to university where they were doing research on CFS which was great because they tested me for everything possible and free, but wasn’t getting help. Did a few trial meds but didn’t know if placebo…..so mom said no more and got a dr. and Cymbalta was key. I got better, it went into ‘remission’ I was able to even have a second child. Wasn’t working though, but a few years later returned to work. Then out of the blue diagnosed with MALS, my SMA and celiac arteries were narrowed from being encased by diaphragm fibers, blah blah, basicly it was smushing the arteries. Well major surgery, hospital for 7 days, on disability now. Can’t recoup….the CFS back. I did also have major family stresses during this time which did not help at all.
So question is anyone taking SAVELLA and then the dosage is one in morning and one at night. I thought that odd since it is suppose to help keep you awake. Can anyone tell me anything about that? I will ask my dr as well but sometimes better to hear from people actually using it.
Thank you and good luck to everyone suffering with fatigue, it makes everything magnified even worse I think.

Jump to this post

Hi!
I was diagnosed with TMJ first, over 30 years ago. I had a great doc whose wife was a dentist. He read about TMJ in her journal and told me about it. Soon after, I was diagnosed with Fibro (several times). It is not unusual to have both and as you know, Fibro is diagnosed by a process of elimination. I am very well aware of brain fog. My hubby and daughter always comments on it.

The reason why people with fibro have the aches and the brain fog has to do with us not getting into the deep, restorative sleep. When I was diagnosed with Fibro, the doc wanted me to go on anti-depressants (low dose), but I didn't want to. My Dad had an issue with pills. Well, about 20 years ago I was desperate and the doc put me on amitriptalyn (spelling??), a very low dose that cannot be used for depression. I started to exercise by walking and lost weight. Within a month I was pain free!! I stayed that way from then on. I have other issues now but not active Fibro. I am only bothered by it if someone presses the wrong spot.

Something to help me get into REM sleep and exercise was the answer. It wasn't easy. At the beginning, my husband had to pull me along. Then, I started to walk on my own. I added the tread mill and weights.

Good luck!
Hope this helps!
Ronnie

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