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.

@sandytoes14

@grandmar @parus @lioness @marcyk
Hello friends and fellow fibro fighters,
I wanted to share with you the importance of speaking up at your doctors visit.If you are like me, you go see your pain management doctor month after month and with few exceptions he prescribes the same medicine or treatment. When I go to an appointment, I fix my hair put on a bit of lipstick and try to look nice. This month, I felt awful and couldn't do my hair, I had dark undereye circles, etc. My doctor walked in the room and instantly took a look at me and knew something was wrong. Now mind you, there have been times when I felt like dirt but still looked "presentable". Anyhow during my exam I finally told the doc how much I had areas on my back that were hurting me terribly for months. Well, I said the magic words I guess and he gave me Trigger Point Injections right then and there. I couldn't believe I had relief before I even checked out from my visit!
So my advice is this: even if you are uncomfortable, Speak Up! We all must remember to be our own advocate and that speaking up does not mean you are a complainer or a whiner. What's the old saying? The squeaky wheel gets the grease.

Jen

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Thanks for the additional recommendations. I drank pickle juice for one and it did help. I take baclofen every night and tizanadine if I get up at night with a brutal one.

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@sandytoes14

@grandmar @parus @lioness @marcyk
Hello friends and fellow fibro fighters,
I wanted to share with you the importance of speaking up at your doctors visit.If you are like me, you go see your pain management doctor month after month and with few exceptions he prescribes the same medicine or treatment. When I go to an appointment, I fix my hair put on a bit of lipstick and try to look nice. This month, I felt awful and couldn't do my hair, I had dark undereye circles, etc. My doctor walked in the room and instantly took a look at me and knew something was wrong. Now mind you, there have been times when I felt like dirt but still looked "presentable". Anyhow during my exam I finally told the doc how much I had areas on my back that were hurting me terribly for months. Well, I said the magic words I guess and he gave me Trigger Point Injections right then and there. I couldn't believe I had relief before I even checked out from my visit!
So my advice is this: even if you are uncomfortable, Speak Up! We all must remember to be our own advocate and that speaking up does not mean you are a complainer or a whiner. What's the old saying? The squeaky wheel gets the grease.

Jen

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@andylevine glad to here it I keep it in refreg if forget to take my pill I go to the fridge.This one sounds weird but it worked on my burnt arm on coffee ,immediately the country person put yellow mustard on it ,took the sting out ,I reapplied it when it started to hurt ,believe me it did the trick no sign of a burn next day.

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@sandytoes14

@grandmar @parus @lioness @marcyk
Hello friends and fellow fibro fighters,
I wanted to share with you the importance of speaking up at your doctors visit.If you are like me, you go see your pain management doctor month after month and with few exceptions he prescribes the same medicine or treatment. When I go to an appointment, I fix my hair put on a bit of lipstick and try to look nice. This month, I felt awful and couldn't do my hair, I had dark undereye circles, etc. My doctor walked in the room and instantly took a look at me and knew something was wrong. Now mind you, there have been times when I felt like dirt but still looked "presentable". Anyhow during my exam I finally told the doc how much I had areas on my back that were hurting me terribly for months. Well, I said the magic words I guess and he gave me Trigger Point Injections right then and there. I couldn't believe I had relief before I even checked out from my visit!
So my advice is this: even if you are uncomfortable, Speak Up! We all must remember to be our own advocate and that speaking up does not mean you are a complainer or a whiner. What's the old saying? The squeaky wheel gets the grease.

Jen

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I totally agree with you! But the doctors have only 10 minutes for each patients today. Take away social chatter, very few can give you a honest opinion, what is bothering you. So here comes the prescrition pad and see you in 3 months. And if you look well, than you are really screwed, because nobody will pay any attention to you. So you end up going from one recommended doctor to the next, and your pain gets worse and more serious. But then, out of a sudden, they diagnose you with emotional problems and guess what, a dependency of medication, that they had no problem prescribing for you for years.

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Do they help your pain??

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Many of my friends love it but it never helped me.

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@chari978

Hi There, I think I've just met my sister from another mother. My life is almost identical to yours. I live in the middle of 70 acres of land so I rarely get to see people all week.. Even on weekends I see people but I can't really talk to them as they're just enjoying the property. Once a month or when I'm feeling up to it, I go out and talk to someone. Plus, I've had two spinal surgeries and a knee replacement. Turns out I'm allergic to the titanium implants. Now that pain has been heightened by the fibro. Sometimes I feel like I'm in hell on earth. I used to be able to get around better until the back op. It was from S1 to T12.
Most days I stay laying in bed for about a half hour, take my meds go lay down watch a couple of my favorite shows.. After that, I scream at myself to stop being such a baby and picture some of the patients that I've seen at MGH That really helps me to drag myself out of bed and take a nice hot bath. Going to get a nice soft massage is a relief. For however much time you can afford. I'd rather go to the spa than eat. Also, my husband bought me a massager with two big round devices on the end. I feel it works for a while and gets the blood moving.----Doctors say that better blood flow helps heal the body faster, it's worth a shot. Try to shop on line if you can. I buy myself a lot of beautiful clothes(in the size I'd like to be). I shop at expensive stores, sometime for hours.
In the end I have to go back and delete all of the items I've "purchased", but it was fun for a while. If you're not into clothes that much, just look at things you've always wanted to have. One more thing, I've noticed that there a lot of clinical trials out there. Just my sister sent me a medical magazine and it had several talks on Fibro. Keep Praying! Carol

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@chari978 sorry about your pain , in back problems are the worst or is it fibro no both which is what a lot of us have but we are fibro Warriors for sure.In 2005 I fractured my back ,and as I'm older now it's worse but for me doing exercise everyday even if it's just moving what you can helps Fortunately I'm still active ,I think just by moving and stretching my muscles have helped ,can you do this in bed? That's how I started,now I can do chair exercises which get your heart raising ,you don't have to go to gym which is out of the question for me. Can you do any?

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@chari978

Hi There, I think I've just met my sister from another mother. My life is almost identical to yours. I live in the middle of 70 acres of land so I rarely get to see people all week.. Even on weekends I see people but I can't really talk to them as they're just enjoying the property. Once a month or when I'm feeling up to it, I go out and talk to someone. Plus, I've had two spinal surgeries and a knee replacement. Turns out I'm allergic to the titanium implants. Now that pain has been heightened by the fibro. Sometimes I feel like I'm in hell on earth. I used to be able to get around better until the back op. It was from S1 to T12.
Most days I stay laying in bed for about a half hour, take my meds go lay down watch a couple of my favorite shows.. After that, I scream at myself to stop being such a baby and picture some of the patients that I've seen at MGH That really helps me to drag myself out of bed and take a nice hot bath. Going to get a nice soft massage is a relief. For however much time you can afford. I'd rather go to the spa than eat. Also, my husband bought me a massager with two big round devices on the end. I feel it works for a while and gets the blood moving.----Doctors say that better blood flow helps heal the body faster, it's worth a shot. Try to shop on line if you can. I buy myself a lot of beautiful clothes(in the size I'd like to be). I shop at expensive stores, sometime for hours.
In the end I have to go back and delete all of the items I've "purchased", but it was fun for a while. If you're not into clothes that much, just look at things you've always wanted to have. One more thing, I've noticed that there a lot of clinical trials out there. Just my sister sent me a medical magazine and it had several talks on Fibro. Keep Praying! Carol

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I do some gentle stretching and walking when possible. I have to be careful stretching as I'm waiting for surgery in December. I have fibro, arthritis, bursitis, tendonitis, bone spurs, degenerative disc disease. I am 54 but feel 94. No fun.

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@chari978

Hi There, I think I've just met my sister from another mother. My life is almost identical to yours. I live in the middle of 70 acres of land so I rarely get to see people all week.. Even on weekends I see people but I can't really talk to them as they're just enjoying the property. Once a month or when I'm feeling up to it, I go out and talk to someone. Plus, I've had two spinal surgeries and a knee replacement. Turns out I'm allergic to the titanium implants. Now that pain has been heightened by the fibro. Sometimes I feel like I'm in hell on earth. I used to be able to get around better until the back op. It was from S1 to T12.
Most days I stay laying in bed for about a half hour, take my meds go lay down watch a couple of my favorite shows.. After that, I scream at myself to stop being such a baby and picture some of the patients that I've seen at MGH That really helps me to drag myself out of bed and take a nice hot bath. Going to get a nice soft massage is a relief. For however much time you can afford. I'd rather go to the spa than eat. Also, my husband bought me a massager with two big round devices on the end. I feel it works for a while and gets the blood moving.----Doctors say that better blood flow helps heal the body faster, it's worth a shot. Try to shop on line if you can. I buy myself a lot of beautiful clothes(in the size I'd like to be). I shop at expensive stores, sometime for hours.
In the end I have to go back and delete all of the items I've "purchased", but it was fun for a while. If you're not into clothes that much, just look at things you've always wanted to have. One more thing, I've noticed that there a lot of clinical trials out there. Just my sister sent me a medical magazine and it had several talks on Fibro. Keep Praying! Carol

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@medicallew the other day I did all of walking not by choice ,if your my walker and thought my legs where going to call off I have gone spurs on hip joints ,next time used all Dr walked alot and hips did,it hurt as bad ?

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Amazingly enough I am still around. It is a beautiful, sunny day and my pain is ferocious. So many I know in the fibro realm feel better on nice days. I am the opposite. Any other member experience thus? Where I reside no doctors want to prescribe even Baclophen to help through a flare. I am desperate enough to look into CBD oil. I know where a lady works that carries the sublingual. Stopped by and she was not in-bummer. She carries one of the better quality as they can vary. Yup, I am desperate. I am not into narcotics and did/do not use them. I also have other physical issues and have learned not to mention pain to a PCP. Wanted to send me to a mental health clinic for antidepressant, etc. for physical pain. They do not even prescribe antidepressants anymore which I will not take as they did terrible things to my psyche/body. I learned the hard way to not ask for help. Anyone w/ an IQ larger than their shoe size and asks intelligent questions evidently is now a threat.

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