help

I have fibromyalgia which, in my case has caused intractable chronic pain. Not all people have what i have.


about 15% of people with IP, intractable pain, have fibromyalgia. Others have arthritis or other illnesses.

People who have fibro and whose pain is not helped by walking, swimming, showers, heat, etc. these things may help but the pain is relentless. As in my case I have to use a wheelchair, I have no choice.

I see a pain management nurse practitioner. They now have a master's course for this disease.

Oh, the opiates like vicodin do not work for people who have IP. HOwever, many fibro patients are helped with this drug, just not those who have IP.


I always wondered how folks were relieved with the supplements, excercise and other wonderful things we can find in fibro 101. I felt angry because I was not getting relief. In addition, my blood pressure and blood sugar readings were crazy. I now understand due to my NP.

There is a lot of information concerning IP on the net.

After one month of treatment, blood pressure and blood sugar readings are back to normal.

Pain management center can tell by your history if you have IP.

Donnaeil

Donnaeil

Thank you Donnaeil and Bayoub2 you have both given me a lot of insight and things to focus on. I'm just sick of pain and sick of feeling like i'm some type of lab experiment or "case study" as I've been told, I'm assuming because I'm only 21. Donnaeil thank you, I feel like I'm not alone now because my dr. and I have tried every supplement and vitamin he could think of, physical therapy made me worse, excercising makes me worse even little steps it seems. What I was referring to about feeling like a "case study" is because I've litterally tried every single anti deppressant you can throw at me including the "3 fda" approved ones for fms; lyrica, sevella, and cymbalta along with every other one you could possibly mention. I hate them all, they change the way you think and in essance change "you".Cymbalta is the one I've been on now for about 6 months and I'm up to 90mg and feel like a zombie. To be honest I don't feel like it works but I tell my rheumatologist it kind of does just so he wont give up on me. I've tried every single muscle relaxer you could throw at me also and the only one that gives a little relief which is only at night is soma, but I do have to take more than I'm suppose to for that to help. I've tried a few different arthritis medicines and they hurt my stomach and didn't do anything for me including a few topical lotions. As far as sleep aids, I've had trouble sleeping since I was a kid. Yes I hate to be repetetive but I have tried every single one you could name also and the only one that works sometimes is ambien. I've been dealing with this nightmare for the past 3 years and honestly this past a little over a year now has been the best/worst of the 3 and that is thanks to the oxycodone which allows me to work and gives me somewhat relief. Why I said best/worst is because does anyone on this forum really think I like EVERY single morning waking up and hunching over my toilet gagging out opiate juice....NO I hate it, but honestly it's a price I will willingling pay for the relief it gives me. I am begining to think that possibly all of these drugs these doctors have put in me have made me worse?! One other thing I mentioned and this started 3 years ago along with every thing else I do have somwhat of a skin condition it's a little better now though thankfully, but I have what I believe to be cronic, tinnea versicolor. As I said it's doing a little better now, but there has been times in the past 3 years where it has been horrible, just all over from my waist up to my neck. I hated to even take my shirt off. So with that part said the polymyositis has me wondering, so thank you Bayoub2. Also obviously the IP seems very fitting Donnaeil, it's just I'm so young....I will definately do a lot of research on this along with my rheumatologist I'm sure. He's very nice and has been very patient with me and I can see he just wants me to get better. Another thing that makes me really interested in the IP is that the last time I had my blood pressure done at my rheumatologist it was 178/149 with a pulse of 137....I've had high blood pressure for the past 3 years but that's the worst I've ever seen it. If I'm not mistaken for a 21 year old male that's insanely high? Well thank you both and I'm going to try and get some sleep...haha if that's possible. But please tell me what you think??

Hey Ouch

Heather Lynn hit it on the head. High blood pressure is totally linked with sleep disorders. I strongly suggest a sleep study. I was just dxed with sleep apnea and severe plmd, which made fatigue and pain much worse. I started on a CPAP machine last week and my BP went down 30 pts.A sleep study would help at least rule out another cause.

You also mentioned that any exercise made your muscles feel worse, that weakness is associated with the myalgias, including polymyossitis, which can be treated with corticosteroids (not my fave, but I'd take em if they helped.

I hope you have a lower pain day and keep posting. We are all rooting for you. Take care

Maggie

Heather, Bayoub2, and teeners thank you very much.
I will definately mention that to my rheumatologist. I looked up some stuff on sleep apnea and it is fitting but im sure I would need the actual test to get diagnosed. It kind of stinks because my appointment with my rheumatologist is tom. but he is on vacation so I am seeing a P.A. and they can't do anything but write you everything from your last appointment. I am going to tell her to lower the cymbalta though. 90mg I feel is way too much. I've been fortunate with my rheumatologist because with how expensive cymbalta is he gives me free months supply samples everytime I see him with samples of soma along with my script of soma. He really has my best interest at heart I feel. There are 4 new things to bring to my dr.s attention; polymyossitis, myalgias, IP, and sleep apnea....but my question is, is should I even bother bringing them up with the P.A. who I have never even seen before? For all I know she might just see me as some druggy or something....and about Pain Management, I actually did get refered there one time but my diagnosis didn't get sent with me for some reason. The dr. I saw viewed me as a druggy I could tell until I pulled out my bottle to show him and then his attitude changed and he even said he could tell I am was in pain just by looking at my hands. But due to the cost and attitudes of the P.A's that I was seeing after my first visit with the actual Dr. I left there and just went back to my rheumatologist. Please any comments I would appreciate, thank you all so much

I don't have a jacuzzi, Hot baths kind of help but only while i'm actually in the tub. I kind of don't like to even get in the tub because it hurts until the water is all the way up. I realize the "importance" and the "emphasis" everyone has put on excersising including my rheumatologist. But I promise I've tried so many different types and methods of excercising and stretching and it only makes me worse and stuck laying down in the bed and even that hurts lol....Still thank you for your suggestion young gma.