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 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.

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So glad you posted this as fibro has so many other dis-ese with it.No wonder people have such a hard time figuring out pain meds

REPLY
Parus | @parus | 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

@jimhd Brain fog? I stumble around as though inebriated. It is not funny. Yet I laugh at myself. May as well. The medications designed to help do not as I have stated at different times. Savella resulted in Serotonin Syndrome. I had never heard of such. I was semi comatose for 3 wks waiting to see a doctor. Fatigue is so discouraging. I tell myself I am not tired. This self talk is not effective. When I see the pain specialist I am going to ask about chronic fatigue syndrome. Why not add something else to the mix? I have been reduced to syndromes, chronic conditions and disorders. Nothing at all encouraging in my charts. I am 10 lbs overweight and this is where the focus is which is far better than the 100 lbs I gained on Geodon. A misdiagnosis of Schizoprenia. Took renal failure to escape that GP. Prescribed Buspar incorrectly. I was having an allergic reaction and was told to give my body time to adapt. I have PTSD!!!
Okay feel BP rising. Think happy thoughts. Stress is an enemy for sure combined with pain. Spent my day painting a Siamese Fighting fish-sort of. Mostly sat and stared at it wondering why I would be painting this subject. Should have placed a Samarisword in it's mouth. Started out a watercolor and ended up a mixed media. I wonder why??? The last time I added media here on Mayo it came out horizontal when it was saved vertical. Can be viewed whilst lying in bed I suppose. Mayhap will make fish my profile picture. Have not changed this for a while. Nothing like messing with those of us living in fibro fog which feels like treading in pea soup.
Okay, enough of my stupidity. Think I will skip the proofreading as I feel adventurous. Hope this is in English. If not I doubt it can be translated.
At least I am not alone in fibro fog. Ball and chain on each ankle and around my neck. Sounds like I have company. Be encouraged everyone.

REPLY
Texas Freedom | @oregongirl | Feb 15, 2018
In reply to @oregongirl "Oh Lord Angie. I am so sorry. I used gabapenten and it worked for me. I..." + (show)
@oregongirl

Oh Lord Angie. I am so sorry. I used gabapenten and it worked for me. I just can't take opiates. Not because I get sick or anything. But I was hooked on them and it took TWO weeks of near death to get off of them. My doctor was furious that I did it with no help. I will never go thru that again. I was hooked on Morphine. My Dr never did anything for my RA except give me pain pills. He was a general practitioner. Who was not familiar with RA. I am so sorry Angie.

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Steroid injections work great. But my appt with my Dr is far apart. I going to talk to her about my giving myself injections. I am not familiar with steroid. Always thot it bad until doc gave me a shot and all my pain seen to fly away.is it habit firming? thanks

REPLY
wandamiller | @wandamiller | Feb 15, 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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Fibro never goes away to my knowledge. I take magnesium and it helps me a lot as well as prescriptions. Lyrica is one.

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pitagirl | @pitagirl | Feb 15, 2018

I read your story. I was dx: in 2003 with Fibro and 2006 approved for SSI. It was not even recognized as a disease in 2003, I can hear where you are coming from I was there. One being alone all day is probably causing you some depression I did but there is the help. Also, all the trigger points i have 16. I took Norco 6x for 6 yrs until i realized that those drugs were killing me. Had my doctor put me on Tramadol 3xday only 50 mg and savella 100mg 2xd. I know you say you don\'t drive but if you want to know what i did you would have to figure out how to get there. I joined the gym aqua therapy is a blessing your weightless. I even got myself into the gym after the therapy and took it slow. I found the light impact very slowly to start. I felt better. Did not help with the sleep issues we do not go into Rem sleeping crazy. Hope my words helped you.

REPLY
32 replies
Texas Freedom | @oregongirl | Feb 15, 2018

I don\'t drive as I was in a car accident. I cancelled my insurance as I did not want to pay monthly on something I was not using. BAD. Now they won\'t take me back. I can get insurance thru other companies. The accident WAS NOT MY FAULT. A school bus hit me. I truly love being alone. I have SO much to do. Internet, read, play with my two yorkies, My problem is getting my son and his wife and my daughter to believe I have something serious. RA. I guess this is common. I am looking for Independent living right now. I am 75 and I hate living in my kids guest house. In Independent living in Texas, there are pools. My problem is swallowing the high rent. The better one bedrooms are 2500 a month. But if you consider, the three meals a day and no shopping or the rides to medical where I now use Uber and my entire output each month is Uber. So, life goes on.

REPLY
5 replies
edda | @edda | Feb 15, 2018
In reply to @pitagirl "I read your story. I was dx: in 2003 with Fibro and 2006 approved for SSI...." + (show)
@pitagirl

I read your story. I was dx: in 2003 with Fibro and 2006 approved for SSI. It was not even recognized as a disease in 2003, I can hear where you are coming from I was there. One being alone all day is probably causing you some depression I did but there is the help. Also, all the trigger points i have 16. I took Norco 6x for 6 yrs until i realized that those drugs were killing me. Had my doctor put me on Tramadol 3xday only 50 mg and savella 100mg 2xd. I know you say you don\'t drive but if you want to know what i did you would have to figure out how to get there. I joined the gym aqua therapy is a blessing your weightless. I even got myself into the gym after the therapy and took it slow. I found the light impact very slowly to start. I felt better. Did not help with the sleep issues we do not go into Rem sleeping crazy. Hope my words helped you.

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I read your story and it has so many interesting points for me. The first one being, that you were taken Norco for several years and then decided to stop, successfully. I have also been taking Norco for neck and back problems. But I noticed, that it also pulls me down in a lot of other ways. I tried to wean off, but when the pain comes back, I end up going up again. Now I am dependent on it. How did you do it? You mentioned some other meds, which helped you. We live in a gated community with their own pools and health clubs, plus lessons. Used to do all of this, including Pilates, tennis and excercise regimen.
I would love to hear from you. This Mayo Connect is a wonderful way of connecting with people, who have similar issues to overcome. Docs sometimes do not have the time to spend with us.

REPLY
pitagirl | @pitagirl | Feb 15, 2018
In reply to @pitagirl "I read your story. I was dx: in 2003 with Fibro and 2006 approved for SSI...." + (show)
@pitagirl

I read your story. I was dx: in 2003 with Fibro and 2006 approved for SSI. It was not even recognized as a disease in 2003, I can hear where you are coming from I was there. One being alone all day is probably causing you some depression I did but there is the help. Also, all the trigger points i have 16. I took Norco 6x for 6 yrs until i realized that those drugs were killing me. Had my doctor put me on Tramadol 3xday only 50 mg and savella 100mg 2xd. I know you say you don\'t drive but if you want to know what i did you would have to figure out how to get there. I joined the gym aqua therapy is a blessing your weightless. I even got myself into the gym after the therapy and took it slow. I found the light impact very slowly to start. I felt better. Did not help with the sleep issues we do not go into Rem sleeping crazy. Hope my words helped you.

Jump to this post

Edda, I hear where you are coming from the pain at times is unbearable. Studies have shown that you have to move. Easier said than done. I begged my pm doctor get me off these terrible drugs it is going to cause organ damage. Amazingly I went from Norco to Tramadol without any issues. Might be the exception to the rule. I take the tramadol and Savella. I also have scoliosis and deg disc disorder. I am not sure what state you are in or if the pool is indoor. You are weightless in the water. If you cannot get in the water ask for aqua therapy. I had to change pm and this doctor only wanted to introduce the epi injections. (which are not even approved by the FDA) can cause blindness, loss of feeling in limbs and death. Not worth it. Of course, i am in pain but I can manage it. If I have to break thru pain I take Tylenol. We have to reclaim our lives move your body. Also, my doctor told me being lighter in weight would help not carrying weight Went from 162 to 115 in less than 1 1/2 yrs. Good luck hope you are having a good day. Donna from Arizona

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Texas Freedom | @oregongirl | Feb 15, 2018

I am looking for a RA discussion

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1 reply
pitagirl | @pitagirl | Feb 15, 2018

Age doesn\'t matter pain is the pain. Support for a loved one is so important. I just reunited 2 yrs ago with my former boyfriend apart for 30 yrs. Love him to pieces but makes me feel sad. I wanted to get a book to read, send articles. Every time there is an issue he gets pissy. So i can relate to you. You say you are looking for assisted living. If $$ is an issue and we all know what that is about. If you are on Social sec disability or your state insurance. You can call the local chapter of adult social services. They will assist you or call 211 and tell them you need resources. Instead of senior living look into subsidized living. There will be a list but take only 30% of your income. Grant, it it is not the tosh mahal but maybe that can help. I to go on the computer keeps my mind busy love my games lol and two dogs a Pomeranian and a 50 %beagle, 37 Boston terrier and 13 bulldog had her DNA done 🙂

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