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.

Texas Freedom | @oregongirl | 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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Before my infusion they give me 4 meds by IV. Tylonol is one but twice your dose. Something like 600

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Texas Freedom | @oregongirl | 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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The first two days after infusion, I had two days pain. The third day I have little to no end. I had not felt this good in years. I wish I could get infusions more often. But I understand the are a chemical..I can dream can\'t I? I am going to ask my doctor about Tylanol 600+

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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.

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Hang in there. Not sure you have done this or not but whole body mediation can relax your body. In your mind tell your body to relax starting from feet, if you listen to soft music. Heck we will try anything.

REPLY
Texas Freedom | @oregongirl | 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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Yes. I have heard about it. Meditation
. I will try anything except nsrcodics.

REPLY
Texas Freedom | @oregongirl | Feb 15, 2018
In reply to @pitagirl "Age doesn\'t matter pain is the pain. Support for a loved one is so important. I..." + (show)
@pitagirl

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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I appreciate your suggestions. However, I am not on disability. I am on Social security. I am looking for Independent living. Meals and transportation included to Dr. Church.redtsurants etc. Most of the low income also have children. I could not handle their noise. I am not being snutty, but quiet surroundings help me. The lower income are also in areas of crime. I would be afraid to walk my dogs.

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Texas Freedom | @oregongirl | Feb 15, 2018

Does anyone know if Medicare has a cap they will pay?

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6 replies
grandmaR | @grandmar | Feb 15, 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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Hi Jen!
I could not tolerate Cymbalta or Lyrica so other than something to get into deep sleep was all the meds I took.
Fibro fog is one of the biggest things, other than pain, that patients complain about. Not only do I forget words and lose a train of thought, I forget complete things ever happened. So, you are not alone. I think it happens to everyone at some point.
ronnie

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grandmaR | @grandmar | 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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Sadly, it does not go away. Although you do not have to have the wide spread pain, you will always have the tender points that will bother you if someone touches them. You might also continue to have Fibro Fog because you are not getting into a deep sleep.

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lioness | @lioness | Feb 15, 2018
In reply to @oregongirl "Does anyone know if Medicare has a cap they will pay?" + (show)
@oregongirl

Does anyone know if Medicare has a cap they will pay?

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I think it\'s ,2500.00 but don\'t quite my on that I don\'t know if different insurance companies are different or not.

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