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.

@oregongirl

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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Ladies when I sold are home in Pa I got rid of alot of things I wished I'd kept ,moved into a mobile home 9yrs later sold it to move to Calif near my son,s family regret getting rid of things now 3 times have done same thing ,once had things in storage ,bad idea but found things missing when I finally settled here in my Sr.apt.Oh well such is life ,right.

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@parus

Well all of you people living in fibro land encouraging you to do your best and what is in your comfort zone. It may mean a fairly lonely existence, but certainly (speaking for myself) better than flares. I do not even ask for pain medication as where I am it is viewed as drug seeking. I stay with the same primary care person as too much changing around or any at all now is viewed as drug seeking. Take an OTC is what they recommend. No need as if it does not help why take it-even as prescribed. In the area I live in prescribing of opioids is rare. Depression and PTSD are in my chart for all to see-it is the first thing in my chart. How far does anyone trying to get help for pain get taken seriously I am told to talk to a therapist. I have a UTI and still trying to see the PCP. Still waiting on a cancellation. So yes, in a fibro flare. There are times when I go to bed and hope not to awaken to another day. As you can see I have and hoping to get some help for the UTI. I don't even mention fibro as bels and whistles go off in the doctor's head that spell out drug-seeker when I have not once asked for them. They are firing patients now for even asking. I do see a pain specialist for trigger point injections which help for a few days. Insurance will only pay for every 6 months even though they only last a week or so. I am allergic to steroids and get shots of a numbing agent that help the muscles relax. So yes, I am rather discouraged right now. 🙁

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I have a real nice rheumatologist a nurse practitioner ,the Dr.told me good by but I'm glad Tina is very good says is open to info I find on research on internet and knows her business since I'm a retired nurse we talk the same lingo.haha

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@oregongirl

Yes. We are headed to a place where no illness can touch us.

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Is the rash a wide effect of the infusions?

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@lioness

Glad you found an apartment you like congrats.I know how you feel about S.s mine is just over the limit by 100.00 When working I started 3different plans for income ,guess what they count your total income ,not fair ,we worked for this money and now penalized for it

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Tina referred me to pain clinic Been there before but needed new referral Be glad to get there it does help with pain

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@oregongirl

Yes, you work hard at your employment giving your all only to retire and realize, there is NO money going into the bank, just out of the bank. The kids today are different. They saw how we struggled after retirement. They now demand retirement benefits from their employers plus vacation, sick leave you name it. When you are self employed your your employee get the day off. Not you. I made a good living. I make too much to get help, and to little to survive. When my husband became ill, and died, I lost his SS. and his Navy benefit. I went from comfortable to poverty overnight. I am very fortunate. A friend of mine had no one to leave his home to. He left it to me. I lived there two years after he died. But, medical was NILL where I lived in the middle of nowhere. So, sold house and moved to Texas. Best medical I could ask for. I guess I just dont know the games you can play to get this and that from the County. I know a friend of mine lives very comfortable while the County pays her rent and drives her two hours to the doctor and back. I pay my rent and I pay my ride over and back. Does not seem fair.

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It's hard to get used to the drop in pay One time when I was working I was getting 6paychecks a month then the bottom fell out ,shocker

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@oregongirl

I know we pay that for our Medicare. AND, I have suppliment insurance which runs me nearly 250.00 a month now. Goes up every year. They would love to get rid of me. But, before I would give up my suppliment, I would skip one meal a day. I never pay a dime out in medical bills. But, I wondered if there is a cap that Medicare will pay? Like lifetime max $300,000 or something like that. I will go on line and see. I was self employed. I feel like my whole life, I worked just to keep my husband and I in good health insurance.

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handle San always gets his

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@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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Naples isn't that far from Long Beach

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@oregongirl

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

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Wow I'm on HMO so just have co pay for meds around 7 mostly Everything else is paid by ins.,look into it but you have to be on medicare

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@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 know. My daughter asked me to look in Long Beach or Huntington Beach. Believe it or not I started Real estate in LB

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@oregongirl

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

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The pro Lem with hmo is they choose which Drs you use. Also they probably WD not approve my infusions ad they are very expensive.. I am on Medicare. What company do you deal with? I will call them. A lot so, I bet they would not take me while I am being treated. You only pay 7 dollars a month? Wow

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