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.

Hi I am also in NY. Can you tell me what doctor you use? And where you live. Thanks so much

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@2122

I tried a diet plan that a doctor wrote and for me it worked. It had something to do with not eating anything from the night shade families such as anything with tomatoes, potatoes, etc. You do have to follow it exactly but it is worth it plus you can lose some unwanted inches as well.

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Nightshades are a botanical family of plants, more technically called Solanaceae. These plants all have certain characteristics in common (like the shape of the flower and how the seed is arranged within the fruit–Wikipedia has a good description). There are more than two thousand plant species in the nightshade family, the vast majority of which are inedible and many of which are highly poisonous (like deadly nightshade and jimsomweed). Tobacco is a nightshade. Some people believe that we can develop a reaction to Nightshades, but you might as well stop eating:{ Peppers...the list is very long and it is very hard to determine a reaction. If any of us knew exactly what made us feel ill, we wouldn't eat it.

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Robbinr, I agree on more understanding needed for illness that does not bleed. However, I do bruise quite a bit. My doctor says my kids cannot accept that their mother is ill. I on the other hand have so much guilt about maybe staying in bed or just lying around all day now and then. I am on Medicare and a VERY expensive Supplemental Insurance. I have drugs that are not covered. I talked to my dr today (a very compasstionate women, who told me stories of her seniors who do not have good coverage. One of my drugs through infusion is 18,000 dollars. I need 2 in next month I believe. Not sure on the time span yet. A man came in and did not have insurance. He was left with either eating or paying for his medication. As for me, I just survive. I have the money from the sale of my home and when it is gone it is gone. I do feel fortunate however to have the funds. There are so many things that we face that others do not understand. They have all kinds of advice. Then my kids get mad at me because I don't tell them every detail. I don't want to. I don't want to worry them or even talk about it anymore. My daughter in law's mother actually tried to tell me that I should not pay such a high price for supplemental insurance. Well guess what...She is just starting with Medicare Wait until she has paid all the co-pays etc. Her treatment if she gets what I have will probably have a maximum charge and then it is her responsibility with her inexpensive or NO supplement Insurance. I paid each and every month as I knew eventually, this would happen. We need to talk to Congress to help those of us who have worked our whole life only to spend it on medical

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Family members who can't see your pain can be cruel. I so hope that the infusions are helpful and are making a significant improvement to your health. I spent 6k one year at a Fibro clinic for IV meds twice a month that were basically a Very Expensive Enema. They just ran right through me, leaving my gut a wreck. When someone says that they have a headache you can't see it, but we've all had one and we know that it hurts. I tell my family about my illness only if they specifically ask. When my brother asked and I told him it felt like I had a bad case of Flu ALL the Time, he said, "I'd just shoot myself." Thanks Bro! Often with friends they don't understand when you cancel or can't do something with them. Those folks just stop being your friends. It is no loss. We have to have compassion for ourselves and for those who don't understand and say cruel things. If my husband says, "I didn't understand which thing you were complaining about." to me one more time...to the Moon! One small vindication for me was I finally got an MRI on my right shoulder. For two years I thought it was just Fibro pain, but the AC is torn and hanging by a thread. Papercuts and broken bones feel the same to me. Chin up, eyes ahead. You are brave and dealing with it - that is what matters. Remember what they say about opinions, everyone has them just like other parts of their anatomy:}

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@2122

I tried a diet plan that a doctor wrote and for me it worked. It had something to do with not eating anything from the night shade families such as anything with tomatoes, potatoes, etc. You do have to follow it exactly but it is worth it plus you can lose some unwanted inches as well.

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I don't get too many Msgs forwarded from here but you folks are the most understanding and sharpest of any of the blogs I inhabit. (FM 30 years, last 5 hell).

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@2122

I tried a diet plan that a doctor wrote and for me it worked. It had something to do with not eating anything from the night shade families such as anything with tomatoes, potatoes, etc. You do have to follow it exactly but it is worth it plus you can lose some unwanted inches as well.

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Have you noticed that there are many more people expressing pain, especially lately?
I am thinking that the charged and fractious Political environment makes us more tense; consequently, more in pain. A chiro friend of mine told me that whenever there was a lot of bad news his Fibro patient started getting worse. I really took it to heart and try to step back from those events to which I cannot effect any change. That doesn't mean I don't want to be active and contribute, but I have to make myself step back from the noise, haste, and just hateful stuff that gets spewed out these days. I'm sure it was always this way, but now it is instantaneous and relentless. This blog is the only one I've ever been on, and while it breaks my heart to hear how many people suffer, I feel less alone. R

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@2122

I tried a diet plan that a doctor wrote and for me it worked. It had something to do with not eating anything from the night shade families such as anything with tomatoes, potatoes, etc. You do have to follow it exactly but it is worth it plus you can lose some unwanted inches as well.

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Hi R, I just joined this site today. I was on a few on Facebook, but there is non stop negativity on those sites and I needed a break. Mayo Clinic popped up on my email so I signed up. You are 100% right with the political climate - effects me a lot. Due to the chronic pain I can't work - I sell things on ebay, but can't hold down a job. I have to limit the TV coverage. Ever since last Nov. I have declined ..... Can't wait for the mid term and hope to see some new female faces .... I wish I could march for women but I can't make it out of my bed. But the hateful bs is bad for most people , especially pain patients.

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@2122

I tried a diet plan that a doctor wrote and for me it worked. It had something to do with not eating anything from the night shade families such as anything with tomatoes, potatoes, etc. You do have to follow it exactly but it is worth it plus you can lose some unwanted inches as well.

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I have a very technical job and I have been in High Tech for 20+ years, but I HATE Facebook. Cannot understand it - get mad when I go there. But some of my most articulate friends write some amazing stuff on FB occasionally and when I get a funny something it makes my day! I look about once a month though. My Mother, God bless her, has started posting God stuff - and I have Nothing against God, but when did she get religion again? I think that we should share some funny things as well as commiserate about our pain. Do you know how to catch a unique rabbit? You 'neak up on it! Ha. RR

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@irene5

Hi. I am so sorry you are suffering so much. I think that hydrocodone may be a good choice for some types of pain, but fibromyalgia responds very well to Elavil and Gabapentin. I took Elavil for years, and it also helped with my migraines, and gave me a much better night sleep. Good luck to you. Irene

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Shame on our son,he doesn't realize how you feel I have O A that is bad enough it along with fibromyalgia.Alot of people just are unaware of the pain.Our group knows how much in pain we all have.

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lOL I never heard that before ,opinion part of anatomy ,can I guess what part?

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