Fibromyalgia pain management

[Guest]

I have fibromyalgia and have taken Lyrica. It did fix some pain for me, but the side effects were horrible! My feet were swollen, I would fall asleep sitting up without knowing it, and I gained a ton of weight. (about 6 lbs a month for a year, yep you can do the math!hahah) Now fibromyalgia pain isnt like other pain so I am not sure if it would help. Plus it is expensive. Hope that helps!
Hugs, Kari

 

[Guest]

Re: Pain management

Thanks Kari, sorry that you had such side effects with the med.Finding the right medicine for chronic pain can be such a time consuming ,frustrating effort! have you found something that works for you?
If I look at what you experienced, the weight gain side effect for Dad wouldnt be a bad thing I guess, and he has full coverage for his medications through Veterans so that is coverered, its just the increased drowsiness that could be a problem as he is already tired alot of the time. Did the tiredness get better once you were on it for awhile/ Or I guess the tiredeness/fatigue goes along with the fibromyalagia so that might be hard to tell. Dont you love how I answer my own questions some times? Drives my family nuts some days!

 

[Guest]

Re: Pain management

No problem hun. Nope, the tiredness never got better. But then again a few months after taking it my husband died suddenly of a heart attack and I was truly out of it for almost 2 years. Constantly sleeping. It did help with the pain though. It helps with diabetic neuropathy pain as well. (which I also have in my legs) I tried taking the smallest dose for 2 months again at the beginning of this year and it was not so bad with the feet. I did still fall asleep from time to time sitting up. 12lbs later I went back off of it. (I have peeled of 62 lbs since my dads ALS diagnosed which is the only good thing that has happened with this damn disease) I have had A LOT of experience with pain meds because on top of the Fibro, I have severe arthritis in my back and hips, along with herniated dics that I refuse to do surgery on because I have yet to know anyone that that has worked for. I finally found a doctor who was able to go in and burn the nerves to make my low back and hip numb. (that was the acute pain that kept me from even leaving the house) So, when I had the acute pain, I was literally on Oxicontin 80 mg 3 x a day and dilaudid for breakthrough pain management. I was a mean person back then, (and I dont remember it that way, but believe me others do!) those levels can make you mean without you even knowing about it. But back then, I had no choice. I have tried the Fentinol patch, which I didnt find helped me much back then, methadone which helped some, but after researching it it should not even be on the market because of what that does to your body! Holy crap! Now that my low back is fixed, but the rest of my back and neck are still a mess, but I can still move around and have some sort of life I take Opana daily. (glad you wouldnt have to pay for that one) It is very mild and is kind of a form of morphine and percocet mixed together. I take percocet for when I have to work and I have extra pain. Now, the opana does not make you to loopy at all. I have had no side effects. I have more side effects from percocet now than the opana, and when I take percocet it is only 1 pill at a time. NOTHING compared to where I have been. What kind of pain is he having? I have had 17 docs over the years and dozens of treatments. Here to help hun!
Hugs, Kari

 

[Guest]

Re: Pain management

Wow, Kari, you have been through the wringer! i am glad that the Opana( not familar with that one, have to look it up) and the percocet seem to be helping. thank you for sharing your expereinces and what worked and what didnt. Also, you are so positive despite all that you have gone through.
dad is having different type of pain in different areas. he is having achey type of pain in his wrists and legs. most likely related to the muscle wasting and stress on his joints(in my opinion anyway?) and then he lately has expereinced a burning type of pain in his heel which can be releived if he can reposition his heel . this only has happened at night in bed so farand then sometimes he just aches all over. Mind you , we would never know unless we asked him, and then I think he only tells us if its really bad. I dont focus on this with him, but I also dont want him to be in pain, and unless we ask, he wont tell because he doesnt want to distress us or bother her caregivers! So if he has a prn order he waits until the pain is quite bad before he will ask( despit all the education we have given him) so we are looking to have him on a scheduled dose , which the Lyrica will be.

 

[Guest]

Re: Pain management

You know I get those hot pains in my feet too. Lyrica did help that. You know another really good one is Neurontin. Now that helped with the kind of pains you are talking about including the weird burning spot pain in the feet. It does seem to have long term effects on some people so I cant take it over their lifetime. (sigh) But I wouldnt consider dad to be a long lifetime user of it. It isnt a narcotic either. If it were me, I would try that before Lyrica hun. If he does go the Lyrica route, do the very smallest dose possible. Ya must keep me posted!
Oh yes, I have been to hell and back these past 10 years. But, I am better now and it is such a blessing! Got to go back to my beloved travel industry part time....what a difference going back to work can make! I am loving life. Hating ALS!
Hugs, Kari

 

[Guest]

Re: Pain management

Kari, you are so positive, thank you ! Unfortunately dad had a bad fall today and hit his head and hurt his shoulder. Nothing broken thank the lord, but he is quite sore, so it will be hard to judge pain control for a bit yet, as he hasnt started the lyrica yet and is still having the gabapentin decreased.

 

[Guest]

Re: Pain management

Well, ibuprofen for the poor guys shoulder! I hope he takes well to the Lyrica. If his feet swell it is not a good thing. A lot of people with ALS get swollen sore feet without taking anything, dont want that to become a problem. Oh give him a hug from me, and tell him we'll get a handle on the pain issues, not to worry.
Hugs, Kari

 

[Guest]

Re: Pain management

Thanks Kari, I will for sure. I wasnt aware about the swollen feet going along with ALS? Dad's left foot has been swollen lately, both at rest when its elevated and when he has been up. We thought it was a circulation issue, unrelated to the ALS, but could it be ALS related?

 

[Guest]

Re: Pain management

Yep, it sure could hun. Massaging it helps. If his feet are already swollen, I am really worried about Lyrica. Hummmmm.....
Hugs, Kari

 

[Guest]

Re: Pain management

I am lost over ALS-MND
Is ALS a painfull illness besides charlie horse cramps
Weakness