Thanks for your note SK. I have a bad habit of keeping to myself when I'm feeling bad. This has been a terrible fall season, the pain in my knees and hips is so bad I find myself feeling hopeless. Also when the pain first started my reumy put me on narcotics. I was up to 125 mcg of Fentanyl and up to 6 Oxycontin a day. Now they're weaning me off. She said she'd do it slowly so as to not put me in withdrawel. Well that's not working the last two days I can't hold my legs still. They twitch and feel just awful. I have a doc appt. next monday, but that seems so far away. Sorry to be so down.
thanks for sharing charlie!
Charlie
Sorry your in a bad spot at the moment. I just tapped on my IPad, living with fibromyalgia, and in my head I thought, living with the enemy, because at times that’s what it feels like. A Horror story if you like. Thank goodness that you are at least in a position to connect with this group. For me I tend to curl up when I’m feeling really bad, and sadly I usually yell at people to go away,to get through the feeling. I’m not proud of that but sadly that is how I cope. I usually wrap myself up by lying on an electric blanket and turning it up high and covering myself with a blanket or whatever and that seems to help some of the pain. I haven’t been through withdrawals, but I have heard it’s really tough. I guess you are decreasing the dose slowly, say from three a day to two a day,that sort of thing.Thinking of you, please keep chatting on this line. Barb
Dearest Charlie,
Thank you so much for posting, I understand your pain more than you can know, and our profiles are so very alike. This kind of pain goes beyond words, beyond comprehension...never a need to apologize to me about being down from pain!
When my GP and I realized that we needed to look past the car accident, my first diagnosis in the right direction was 'Overlap Syndrome'. The best way to explain it is to say that you have many symptoms of several autoimmune diseases, but don't quite have any of the diseases, but it means that you will at least have some of them, if not all of them, in time. The Sjogren's was the first to be confirmed, Raynaud's was highly suspected, and eventually was diagnosed. They continue to look for SLE, Scleroderma, my hands are sore, stiff, swollen, red, and very shiny. Psoriatic Arthritis (Spondylitis)was diagnosed rather than RA, causing joint damage, Spinal stenosis, Costochondritis. They continue to look and test for MS, so far no brain lesions. There are times that I twitch uncontrollably and I have had severe muscle attacks that look like seizures.
At one time my pain was so great that my GP was giving me shots of Demerol in the sternum area, and giving me Actiq for pain, that ended when I was sent to a pain management Dr at Johns Hopkins who hit the ceiling that I was being given a pain med only meant for end of life patients.
The best thing I have used to date is Enbrel, a biologic disease modifier. It is slowing the progression of the destruction, and like Lupus, Psoriatic Arthritis is systemic, going after every single cell of the body. I am very hopeful that they are preparing to use a biologic with you, since they are withdrawling you from your pain meds. Have they discussed a plan to replace what I see as the only means of combating this pain?
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2962556/
http://www.arthritistoday.org/news/new-lupus-treatment-benlysta123.php
I had to start with Sulfasalazine, this caused a stomach ulcer, next Methotrexate, causing blisters all through the inside and outside of my mouth, I was fortuante to have had these side effects, now the Insurance Company will allow me to try a biologic. The great thing about them is they bypass the systems that commonly cause the side effects, are so astonishing that they can target the area they need to go to right down to the very cell. Side effects are rare.
Glad you are to see the Dr Monday, hopefully he/she has a plan of action, just insist on it!
This may seem trivial but believe me that I have found through my Chiropractor that a good Calcium/Magnesium/D3 will help those jumping legs, Lyrica helps as well.
Oh God, I just looked at your profile again and see that you are in Canada, that means unless something significant shows in your bloodwork, Which only happens with 20% or less with those who surely have autoimmune diseases, they will never approve a biologic. Everyone thinks socialized medicine is going to be so great, but they obviously don't know the down side of it! I could draw up a long list of people who have had joint replacement after joint replacement, but cannot get on a biologic. Well, hopefully your Lupus ANA showed up in your bloodwork!
I encourage you to use the time you have remaining before your appointment, find out all you can about biologics for you various autoimmune diseases and ask, if necessary, insist that you be treated with them!
Charlie, this is the best group, few here JUST have fibromyalgia, there are nearly 100 of our members who are currently active in the group who have Arthritis, several who have Lupus, Raynauds, Sjogrens, and other autoimmune diseases. It is my personal, non medical professional, opinion, that many remain undiagnosed, or under diagnosed.
You could most likely teach us much, so please don't think me condescending when I encourage you to find just the right place between appreciative and insistant as far as getting the very best medicine that you possibly can, if you cannot live without pain meds, make it perfectly clear.
Please don't ever think that you are 'bringing us down' by voicing how you are feeling, I'm never long gone from the site, and I understand very well what you are going through.
It is my dear grandchildren who keep me going, who make this fight worth it, they still beg and bawl to come spend time with me, still think I'm just the greatest! They all have Psoriasis, so their chance of escaping a similar life is slim, so I am going to try anything I can, be part of the research for treatment. My Rheumatologist said that just recently the diagnosis time for Psoriatic Arthritis went from 30 years down to 7 years, and hopefully that is even improving as we speak. Doc says that 'the golfer', meaning Phil Micholson is doing alot for the disease, it is being recognized and treated with the medicine of the future!
Chin up my girlfriend! We are going to give this one hell of a fight! I'm with you, will talk ANYTIME!
Love and hugs,
SK
Charlie, my heart goes out to you !!! Can they try small doses of methadone while you decrease the other narcs, I know there are other things( I’m fogging right now) but other meds to help withdrawal, ?? I sure hope your doc can help with something. I can’t imagine how awful that must be especially with fibro… Ugh
Also I was wondering … If you don’t mind me asking , how long we’re you on the Fentenyl ??? It’s something I am exploring with my pain dr. He said we could start at 12.5, did you start low and gradually move up in dosage? ( what time frame ) would you discourage fentanyl use, does it just not work after a while ???
Hope you are getting through this very tough time
Hugs & blessings
Ahh my goodness sometimes I really don’t think I can stand one more day of this terrible pain. When Im really bad I just stay home under the covers & feel sorry for myself. The medication which helped for awhile is not working as well as it used to. I have now been sent to a chronic pain doctor. He is testing me to see if I would be a good canidate for a procedure called radio frequency ablation in which they deaden the nerves with heat so your nerves can no longer send pain messages to your brain. This makes absolute sense to me & I wonder why most doctors don’t even mention this procedure to their patients. I found about it on Dr Oz!! If I don’t do this procedure the only other option left is more narcotics! Back to the procedure, your nerve endings grow back so you have to do it again but you should or could be pain free for 3/6 months & I for one would be thrilled to death for any relief at this point. 3 years is enough of suffering. Please check out radio frequency on the web to learn more about it. After I have it done I will let you know how I’m doing.
Radio frequency ablation
Check out more info on it on the web & Utube has videos on it as well. Don’t be freaked out. It doesn’t hurt,
Petunia just had this done, ask her if it hurt!
PETUNIA ITS SUZYQ SK TOLD MR YOU HAD RADIO FREQUENCY ABLATION WHEN DID YOU HAVE IT HOW LONG DOES IT TAKE TO HAVE DONE WHAT HOSPITAL WAS IT DONE WHAT AFFECT HAS ON YOU HIW LONG DID IT TAKE TO START WORKING IM INTERESTED IN HAVING IT DONE LET MRME KNOW AS SOON AS YOU SEE THIS POST THANKS
Charlie,
I meant to invite you to join our sub-group for Raynaud's. Just click on groups at the top of the page, we'd love to have you!
Don't do it. I started out at 50 mcg's about 3 years ago. They work for a little while and then have to be increased, by the end I was at 125 mcg's and they weren't working. I'm on Cymbalta and Nabilone (synthetic marjuana) among other things. They seem to help but not enough when the pain is bad.
Thanks everyone for your well wishes. My doc doesn't know I'm in withdrawel, so I'm sure she'll do something. I'm also going to ask about p/t as I see some of you take it. No doc has ever suggested anything like that for me. Thanks again venting helps, I try not to complain to my family, I don't want them to get sick of me. Talk to you soon :)
Thank you Charlie for your quick response, I am going to seriously think about what you suggested, I’m just so tired of being in pain day in and day out, they say exercise is the best treatment, I just don’t want to get worse, & I know when I use my muscles even a little they hurt more, so perhaps I will look for other options…
Thank you so much for your honesty !!!
I know this must be difficult for you right now, take a list when you see dr. On monday
Let us know how it goes
Have a wonderful turkey day !!
Hugs
Oh, that's horrid. Why put you on those drugs only to take you back off of them?
Charlie, that's too bad that you're feeling so badly. Fibro just does a number on us and our bodies. It's hard to figure out how to handle it when our pain becomes worse. I certainly hope your doctor has a good plan for containing your pain now that she's taking you off your other drugs. I wish i could say more but am in pain myself.
Keep on your doctor to get you new drugs so you can get comfortable SOON, charlie.
I'm so sorry you're going through this!!
Aloha- I have had RFA (high frequency radio ablation) on 3 levels both sides of my low back, L3,4 & 5. I had my left side done in 2006 and though it was very painful for about 4-6 weeks after, everyday got better and I had 3 years with little pain. I was able to golf and coach softball. I could tell when the nerves started growing back - twitchy little pains of fire down my butt, hips and leg. Had it done again and it lasted about a year. Have had both sides done the last 2 years. Wish it lasted longer like the first time, but doc says I’m getting older and discs are degenerating. I have very small facet joints and my nerves get squeezed which cause lots of pain. Have had many facet injections, sacroiliac injections and epidurals. It’s keeping surgery at bay for as long as I can handle it. You are given versid to make you not remember the ablation, but I for some reason can have the max amount and hear everything said and keep up and remember everything about it. I grit my teeth and cry through it because I know the end result will be less pain. If you go into it with that frame of mind, the 4-6 weeks is nothing. My doc gives me hydrocodone for right after the procedure ( which is done under X-ray so they know where they are going - done in a surgical suite). Just waiting for insurance approval to have it done soon. Unfortunately they can’t do both sides at the same time because then they would have to use general anaesthesia, as it takes about 30-45 minutes a side.
I highly recommend it and wish I could get it done tomorrow. It’s not a cheap procedure, do make sure to have I sura ce approve it. Hospital expense is about $4000 and doctor is about $1500. In Hawaii I bet it is more expensive. I believe either SK or Petunia had it done this summer - brain fog - and found it to be painful after. Her doc didn’t explain that the pain would be worse after than before for a few weeks. So make sure your doc explains everything to you. They may do a nerve block first - if your pain is reduced then your a good candidate for RFA.
Pain is pain. I spoke with a nurse yesterday who also has Fibro and she explained it like this " we have a low threshold to pain, but we have a high tolerance to pain." For some reason our brains over react to pain, but we can sure put up with more pain than a " normal" person. I wonder what it would feel like to have no pain? It’s been wayyyyyyyyy too long.