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.

doxyjune | @doxyjune | Feb 21, 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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Hi @jmmb, at least you sort of know what happened to you. Not that what happened is good but you have some kind of clue. My body is just a mystery. Thanks for your posts.

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jmmb | @jmmb | Feb 21, 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'm sorry @doxyjune do you have any diagnosis for anything? I didn't read if there were posts before so I don't know your story. I do wish there was some diagnostic test Some people don't think it's real since it's not black and white. Then I start doubting myself and get frustrated. Because I also have MALS I don't know what makes what worse. Well good luck to you

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doxyjune | @doxyjune | Feb 21, 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 got a diagnosis of fibromyalgia a year ago, but the rheumy did not want to see me after she made that diagnosis. She didn't even want to give me pain dr. referrals. I am on my own for now but will try to find another rheumy although I don't know what they can do for me. I am not educated about MALS, but wishing you well.

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jmmb | @jmmb | Feb 21, 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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Thank you. I'm sorry you are on your own. It doesn't sound like a very good dr if she just diagnosises you and then does nothing about. Just keep educating yourself and find a dr that can help. I know that is easier said than done, I'm doing that now myself. Good luck. I wish you well

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Texas Freedom | @oregongirl | Feb 22, 2018
In reply to @oregongirl "I don\'t drive as I was in a car accident. I cancelled my insurance as I..." + (show)
@oregongirl

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.

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Lioness... Even good area apartments have issues. I read the reviews before I make a decision. I looked up the reviews of a unit I really liked....Thank God I looked over the reviews. Pictures of RATS in the apartments. It would take me one rat and I would be out of there. Now I know the apartments and the area. They are really good, It is not their fault they have RATS. In New York million dollar units have Rats playing on the sidewalks and alleys in broad daylight. Then I read the comments on the mgt and Repair people for that unit. By the time I am done, I feel like I can take any insults from my children. I finally got upset with them and said LOOK, you do not have to believe me that I have RA. You do not have to accept that I choose to take poison drugs for Infusion. It is my body. I truly believe doctors have gotten to the top of the barrel on disease prevention. I think the issues we face are the result of years of doctors not knowing as much as we do. My doctor took many many blood tests. When my son and I visited her, first thing out of her mouth was YOU DO NOT HAVE FM. For now I am treating you for RA. Well that was enough to tell my son...SEE I told you so... What my son missed is that the doctor found something even worse on my blood tests. But, there is confusion in why it comes up and then goes away. Even the Blood specialist is blown away by the blood tests. So now, my kids just put up with me. I live with the pain that I have daily. My arthritis i n my back and neck is starting to get really bad. I have finally been referred to a Pain Mgt doctor. This is a long process and is not for the weak. You must be strong, read you blood reports (U of Texas) has all of that on line now. The only thing they do not put on line might be the discussion between doctors about your case. Hang in there everyone. We might just be the test people for the future generation coming up. Doctors will know that THEY HAVE FIBR and RA. My heart is now suffering from the pain. What next. Stupid govt taking our pain pills like we are children. You had better believe if they have pain, they get what they need.

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Texas Freedom | @oregongirl | Feb 22, 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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Thank you Pita girl. They want me to use my savings first. My savings is not huge, but gives me some sort of security that I won't have to live on the streets.

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lioness | @lioness | Feb 22, 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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Oregongirl ,City view Apts 3333Pacific Place Long Beach California is 750 for single ,1031 for 1 bedroom.If you get on Section 8 it's about 1/2 the cost.We have a library,computer room,gym community room activities ,but 2times a month for shopping You have to be 62 to get in.

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lioness | @lioness | Feb 22, 2018
In reply to @audreyb "Don't know if there is a cap?.right now Medicare premium in San Diego is $134 month..." + (show)
@audreyb

Don't know if there is a cap?.right now Medicare premium in San Diego is $134 month but some income levels pay more based on incomes over a certain level..suggest you look/read the annual Medicare booklet published and mailed to those enrolled in Medicare . I believe you can request this publication from Medicare.
Liege

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I do the same look for what We want then toss it

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Parus | @parus | Feb 22, 2018

As to tossing things...I have done this so many times and later regretted some of the poorer choices. Such as books. Why keep so many books? No reads books any more they all use the internet. This is of no use to anyone. No one cares about all of this artwork-the list continues. This usually is a combination of fribro, depression and PTSD. I have, at times, felt so awful I was surely drop over dead and my children would be stuck with stuff they do not need. Oh yes, also a large dose of self-pity. Can say I have downsized a whole lot only to find that in my miserable state of mind I did throw away some things I still needed. Why did I throw a way all those old photos? Why art supplies? Why all of that paper? Most of my clothes? Even my SS card!!!! I surely did not want anyone stealing my identity...Mad sense at the time.
Still learning to not go berserk and make decisions in such a state. Oh and let us not forget things like cooking utensils, plates, glasses...There have been times when I would have climbed into the dumpster myself, but threw my step stool in first.
This is true and not made up...but when I realized I was still living it was too late. Sad, but true. The neighbors must have had a hay day.
We all do dumb things.

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Texas Freedom | @oregongirl | Feb 22, 2018

I just did that this past be June. I sorted out things I wanted to keep and then threw most of that away. I actually gave all of it to my church. I am surprised my church did not send me a mental health expert. I gave away antiques and things I won't mention here that had great value. I was moving to Texas for better health care. Many times I have opened cupboards for something I no longer own. I slowly am replacing things but by they are junk next to what I had. I think I was so physically hurting and thought I would surely die and my poor kids WD be stuck with things none of them want. I hear you and someone needed to rescue be us. Lol

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