Introduction

[crazylady54]

Hi All, I was diagnosed with FMS/CFS in 2002 after several months of severe fatigue and thinking I was coming down with a terrible flu.  I would ache from head to toe and feel like I was running a very high temp and have chills but after sleeping for several hours I would feel a little better only to repeat the same scenario the very next day.  Working in the operating room as an RN I was describing my symptoms and was encouraged to make an appt as soon as possible with a rheumatologist.  Of course after ruling out everything else I was then diagnosed with fibro/fatigue.  At first I managed to get by with steroid injections in hips for bursitis every few months and NSAIDS.  Unfortuneatly I had gastric bypass about a year later which ended my use of NSAIDS but I did have a 100lb weight loss.  I didn't have very many problems for a few years then I had a flareup of fibro, I did have various steroid injections for low back pain and was dx with DJD and cervical bone spurs and arthritis though during those last few years.  I started seeing a pain mgt md who has been an absolute life saver if helping to get my pain under better control, not totally gone but fairly manageable, at least until Oct 08, which was the beginning of my worst flair ever.  I would get home after a busy day and wouldn't be able to get out of my car after I got home.  Finally I wasn't able to even go to work for the first time ever.  I was able to finally return the 1st of December but not back into the opereating room which I loved, I couldn't take the cold or being on my feet all day and my hand strength had decreased so much I couldn't open containers like usual.  My place of employment did have a position where I could be in an office so I could use a heater when needed or a fan if I was too hot plus I was on the phone 60% of the time so much less physical.  I managed to work until July 09 and have been unable to work since then which has been so hard for me.  My daughter, 34, who just graduated with her BS in Nursing and had so much to look forward to and now had to move in to help take care of me physically and financially.  I now have neuropathy in my hands and feet, having problems with dizziness, memorary loss so now my daughter drives me to md appointments also since I no longer feel comfortable with driving.  I will drive a couple of miles to go to store but stay close to home.  My md thinks we need to try to back off ALL my meds and start over from scratch!  She thinks I could possibly have an opiod induced arthralgia plus all the meds could be contributing to my memory loss and dizziness.  I can't understand why :)  I''m on a Fentanyl Patch 50mcg q 3 days, Cymbalta 120mg, Amrix 30mg (muscle relaxer), Restoril 30mg, Norco 10-325mg 8 tablets a day, Ritalin 40mg/day, Mirapex 300mg, Gabapentin 1500mg/day plus all my supplements.  I do have to take Magnesium 800mg/day and I eat a couple of bananas a day otherwise I too have horrible muscle cramps.  My potassium also runs low normal even with the bananas.  I was afraid this was going to be my new normal but talking with some friends from a group I just joined said most likely not but fibro flares can last a considerable length of time.  Oh and yes I have tried Lyrica but it did not agree with me, the gabapentin is actually the chevy version of the cadillac Lyrica.  I am also applying now for long term disability which is really a hassle!  I can't imagine not having my Angel of a daughter to fill out all the paperwork for me let alone keeping track of my meds, md appointments, etc.  Thank goodness she was an exc assistant before becoming a nurse so she is extremely organized.  Wow, I did get a little long winded here, so sorry.  I do look forward to being a part of this group and do want to wish you all a very blessed Christmas.  
Soft warm hugs.  

[concerned621]

Please DO NOT ween off any of this without your doctor over seeing it. I hope I didn't imply to do so.  I am not a doctor and would NEVER advise you to ween off your medication.  But having personally taken many of the medications you are on and experiencing so much of what you are going through. I personally did ween myself off a lot of what I was on and would NEVER recommend it.  It was awful. My life is night and day to what it was when I was on all of them.

Igarfy, I would love some information on Cymbalta. I did try to find some negative information and couldn't find a thing. You have me very curious because it does work for me but as you can see I am so vigilant about what goes in my body due to so many bad experiences I would love to know more and maybe where I can find information on what you referred to about Cybalta. If I did disagree with you it was pertaining to me only. It has helped me a lot, with pain and with depression and I have not noticed side effects.  But as always would like to know more.  Take care.

[igarfy]

Please be cafeful weaning off, espically with the cymbalta as it causes horrible withdrawls (research it and ask your doctor). For the lady who disagreed with me ,,,you may be ok now, I was for a while, then it sneeked up on me and no one
not even my doctor could undertand what had happened to make me sooooooooo much worse.  There are many poeple who will tell you the same story. Cymbalta is dangerous. MY internist  will not even prescribe it to any of her patients anymore and she is the chief of staff of a hospital in Los Angeles.

[concerned621]

Sounds like a great plan.  Starting from scratch will get you your life back.  The main person who woke me up to this was my neurosurgeon. I went back for a follow up appointment after the 3rd cervical surgery. My pain management doctor had put me on Fetanyl patch. My neurosurgeon said "get off of that now, long term there are so many possible problems and there is no quality of life."  I was very offended because I thought how dare he, he doesn't have this pain that I am in. I stayed on the that patch for several more months. But he was absolutely right.  I would lie in bed all day, my kids had to do everything.  I had no life.  My pain was gone but so was everything else. I lost weight because I couldn't bring myself to eat on the patch, I was thin but felt horrible.  I really do believe my surgeon doesn't have pain so he doesn't know what we go through with severe pain but he had a good point.  There are combinations of medications and supplements that can be used so that we aren't so overly medicated and confined to bed.  Of course there are times when we are in bed and the patch is necessary for some of us I would never say it doesn't have it's uses but please try to discuss all options with your doctors.  
take care and Happy New Year.

[crazylady54]

Wow, I looked up all my meds and I think almost every single one of them had all the
same same side effects which are the same as what I am having.  The last time I saw my MD we talked about slowly weaning off everything to get back to ground zero then slowly add back what I absolutely need.  I know I have to do something, all I do is lay in bed all day and night and maybe get out of the house every 3 or 4 days to do errands with my daughter.  I did sleep all the time, almost like narcolepsy, but my psych MD put me on Ritalin to see if it would help with the fatigue.  It helps the mental fatigue but not the physical so at least I can read more or be on the computer longer amounts of time before I fall asleep.  Speaking of being sleepy I am now.  I did want to thank everyone for sharing with me.  It is so helpful to know we are not out there alone and we are not really crazy ;)
Happy New Year and be safe

[concerned621]

Hi and I too am so sorry. You sound like me about 4-5 years ago and I am going to disagree but will research the Cymbalta the minute I get off here. I have thrived on it and have not heard anything negative about it. But will definitely want to know more in a few minutes.
It's the Fetanyl patch.  You described my symptoms. I was in a flare up for over 1 year. Now I did have a car accident and 2 surgeries on my spine within a short time. Then a 3rd surgery on my spine. My body was so out of whack. I was put on the patch for severe pain. I decided because the only thing I could eat was sweets, I had the strangest sense of smell, all I wanted to do was sleep, I basically could not function I took the patch off. I did not know what would come next. Hallucinations, vomitting, days of pure and utter pain. I immediately put the patch back on and weened myself off of it slowly.  All the symptoms I was having slowly went away.  It took some time but I got my health and my body back on track.
In addition Gabapentin at that dose is also doing similar things to you.  I am not a doctor but you really need to consider stopping both as soon as you can.  I take Gabapentin only as needed. It helps with nerve pain and there are times I must take it and in the past at a very high dose I had the same symptoms you are describing.  I cannot imagine having both the patch and Gabapentin at those does in my body.  Please try to switch to something else soon.
And then there is Mirapex, I cannot express how horrible the side effects were for this one. I have talked to so many people some on this website who experienced psychotic episodes on this medication.  It is used a lot for fibromyalgia.  
I'm actually getting dizzy and nauseated thinking about the amount of medication you are on.  I am NOT a doctor but have been on all of these medications and I would NEVER take any one of them again and I would NEVER take any one of them at the same time. Please talk to your doctor and get off of them with your doctors supervision.

There are so many other combinations and medications you could take and not have this many meds at one time in your system.  I've had 7 surgeries on my spine and have had fibromyalgia since 1992.  I had to go on disability 7 years ago.  I had a great career but very stressful.  My pain is bad and daily.  My pain is controlled with oxycontin and percocet for breakthrough pain.  I also take Cymbalta which has helped me so much and a low dose thyroid medication.  There are studies showing the link between taking low dose thyroid medication and fibromyalgia.  It helps with pain so much. There are also many supplements and B12 shots that can help with pain and CFS.

In reading your post you described me.  I can tell you your pain can be better managed  and you shouldn't feel this bad, it's from all these medications.  Please keep in touch.

[igarfy]

Please listen. I was just like you. I didn't even realize it for over a year and then the last symptom is I started thinking about suicide every day. I was a medic in the studios when I got fibro from a very bad TC which broke 11 ribs on my right side and caused massisve soft tissue injury to my sternum. It's the Cymbalta.....Please go online and look up the side effects of that horrible drug. It took over a year to get weaned off as it causes horrible effects like brain zaps when you are weaning off, and you are on a high dose. I was only on 60 mg at the end. If you need any more help please let me know. I can also put you in touch with many others to learn about this drug. We are trying to get it taken off the market for fibro. I am so sorry for you I know what you are going thru. It has been about 18 months I think, and I am so much better. I lost 40 lbs., but best of all my mind is clear and I only take 2 vicodin a day. But, I feel safe driving and can enjoy the day as before I was in constant brain fog and depressed every day I hardly went anywhere or did anything. Good Luck

[dustybrown]

Hello and welcome!
Thanks for sharing your story and joining us here. I have talked with others who have gone through the gastric bypass surgery as well who have Fibro. Sometimes it tends to cause an intense flare up because it shocks the CNS so to speak. I guess you could call it a trauma to the body, but I have seen people pull through.

I have a problem with potassium too and no doctor can figure it out. I have to take a supplement. I am on the low end of normal even with my supplement. How are you doing with the Cymbalta? I am not particularly fond of that for Fibro. It was very bad on my digestive system too. I don't like the Amrix either- I think there are better more effective options out there. Just my thought. Feel free to PM me if you need any suggestions.  

There are a lot of great people who participate in this forum who you will find you have a lot in common with. I am sure they will learn a lot from you and you will learn much from them as well. By the way...I can't open containers either...:)

Thanks again for joining us!
-Dusty

[mnkyluvr68]

Hello and welcome!

So sorry to hear you are going through so much. Your story touched me and I immediately called my son to thank him for all he does for me. I'm so glad you have such an amazing daughter! I am still learning about this syndrome and am just starting to try the heavier pain meds so I can't offer advice on anything, wish I had the magic answer for you :-) I am still working but have days that I can barely move, just sit, hurt and cry. My son is 19 but lives with his girlfriend so I am on my own most of the time. We are very luck to have such caring children. My son will come clear across town to open a jar or take out my trash if I'm having one of those days or weeks :-) I didn't realize that being unable to open containers was part of the fibro, I've had trouble opening things as simple as a bottle of gatorade. Thank you again for sharing your story, good luck with the disability. Unfortunately I don't think I'm very far behind, let me know how it goes for you. Take care and Merry Christmas...