Need all/any advice

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Date Joined May 2009
Total Posts : 99
   Posted 2/1/2010 5:58 AM (GMT -7)   
Here is the shortest version that I have!  As long as can remember I have had fibro- even though I was just dx'd last year.  I have been through 2 rheumies (they aren't very plentiful in small town America so it was pretty tough finding them), 2 pain mgt docs, more tests than I can count and Neurontin, Lyrica, Zoloft, Cymbalta, Vicodin, Savella (there may have been more early on but those are the big ones! Fibro fog!)  Anyway, they all did the supplement, diet and exercise things (to be honest I learned more about supplements and healthy living here at the healingwell community).  The rheumies did the fibro meds that "showed success in treating fibromyalgia" (by the way none of them worked for me long term.)  Dr. Great Guy (my family doctor) helped me with the pain while I was being dx'd and treated by the rheumies (since none of them dealt with pain medicines).  He gave me Vicodin (closely monitored) and it has worked for the better part of a year.  If I don't take it I have pain but nothing else as far as withdrawls or other issues.  I am pretty lucky that way- when I medicine no longer works for me I am able to just stop.  The same thing happened with migraines and Darvocet.  When the Darvocet no longer worked I just stopped.  And I found something that did- luckily enough it was prescription strength Ibuprofen.  And that's what I used for a while for the pain that started to get really bad in my legs, but soon the pain got really bad and it spread all over and well, you know the rest.  Vicodin is still working (at the same dose for almost a year).  But I realize its not a long term solution so I went looking for more answers.  When the rheumies told me that they had taken me as far as they could we all decided that a Pain Mgt doc would be a good next step.  So I went to one close to Chicago (its about 2 hours away) and I cried.  I was there for 4 hours and I spent exactly 30 minutes with the Dr. who told me about the supplements and exercise (which was hilarious because after I had already told him I was on everything he recommended I schooled him by adding to his puny list with my healingwell list!).  I then asked the pain dr. what i was to do about the actual pain?  The last 10 min he told me that he would write me a script for methadone (and another for sleeping I think clonodine?  I am not sure since I never asked him for anything for sleep).  And then he left the room and a nurse came in to give me the meth script (he forgot about the other one in the 5 minutes that he's left the room) and she gave me a "sample" cup.  I had no idea what it was for so she explained that I would need to take a drug test (beginning that day) every three weeks at their facility?!  And then I would get the script for the next month.  Um, drive 2 hours once a month for a drug test?  I started to feel like a suspect and uncomfortable and uneasy.  And I know that I shouldn't have and that it is a serious subject and there are precautions, but I still felt rushed, uneasy, uncomfortable and very generic.  All I was to them was another patient file.  The doctor was two hours late and unapologetic and no one smiled.  I had to explain to the nurse (yep an RN) how to spell intolerant (as in lactose) on my chart.  I called Dr. GreatGuy and he agreed that methadone wasn't right for me at this time.  So I went to see the latest pain mgt doc and even though I told him I wasn't interested in trying anymore antidepressant style treatments (the Cymbalta was enough and I had already tried Paxil years ago for migraines) he prescribed me Savella.  He made me feel that if I didn't try all the official Fibro treatments he wouldn't go the pain route- even though that's what he is.  So I got the starter pack (no free samples from this guy) for $100.  And exactly three days into it the side effects where so bad I was scared.  I had hives/rash, trouble breathing, chills, body aches and usual "stomach" issues (um you know the ones!).  So I stopped after the third day (the lowest possible dose).  I'm thinking allergic reaction?  WHen I ask for pain meds, the medical proffessionals make me feel like a junkie.  But if I don't I can't go on like this.  I really can't.  You all know- getting out of bed can be a challenge.  And through all of the "let's just try its" I have managed to gain 90 lbs.  So I am at the lowest point of my life to date.  Any and all advice would be really appreciated.  I don't know how I would have gotten this far without this site and the people who belong to the community here.  And thanks for letting me ramble on this long!smilewinkgrin
Dx'd with Fibromyalgia, High Blood Pressure, TMJ & Migraines
Zoloft (200mg/day), Atenolol (50mg/day), Lyrica (150mgs- 3 times/day), Yasmin (continuously), Vicodin (1000mg as needed).  Oh and a LOVELY retainer for the TMJ! 

Forum Moderator

Date Joined Apr 2005
Total Posts : 17526
   Posted 2/1/2010 8:11 AM (GMT -7)   
Trish, I'd stick with your Dr. Great Guy if I were you.  He probably knows as much, if not more, as to how to care for you and you really trust him.  That is huge!  If you are wary of what a doctor tells you, you really won't have success.  It's amazing how much our minds play into how we feel.
I have avoided the high powered stuff for the exact reasons you have stated.  The side affects of Lyrica and Savella are too much for me, personally , to want to try.  Narcotics are great but then you need more and more of them, over time, to get the same relief.  You have found that out, too.  Your body builds up a resistance to them, I believe.  I do have a prescription in my medicine cabinet for Vicodin.  I've had it for over five years but have never taken one.  They are my security blanket!  I know they are there if I REALLY get in problems.  But, you see, I know that the pain waxes and wanes with fibro so I just wait and then I feel a little better. 
Now, if you are trying to be pain-free and stay pain-free, that is part of the problem.  The only time I was pain-free in the two decades I've had fibro was when I was given morphine for a partial bowel obstruction.  I have fibromyalgia and I know that I'm going to have pain.  I have totally accepted that fact and have used things to help me control the pain so I can enjoy my life.  Without these, I can barely move.
I use ibuprofen with food, extra strength Tylenol, malic acid/magnesium supplements, and vitamin D3 for my pain and fatigue.  These have helped me a lot and there is info about the supplements in Fibro 101.  I also keep moving.  That is a must for me!  If I sit or lay too long, I will be stiff as a board.  I walk, do walking-in-place videos when I can't get out, and I swim.  Those are my gentle exercises.  I also do stretching exercises and they, too, can be found in Fibro 101.  Without the gentle stretching and the gentle exercises, the pills don't help as much.
I see you have high blood pressure.  Do you have high cholesterol, too?  If you do and are taking a statin drug, they can take out the COQ 10 out of  your body and that can cause muscle pain, too.  There are COQ 10 supplements you can take.  I'm on a statin because I'm diabetic and my doctor wants me to have extremely low cholesterol because diabetics are more prone to heart attacks and strokes.  He told me to stop the statin drug for one month and take 200 mg of COQ 10.  I'm doing that right now.  Then, after the month has passed, take the statin drug again but I'm to keep taking the COQ 10.  I'm anxious to see how this will work and will report on it soon.
Be sure to pass all of this by your doctor.  You seem to have a good rapport with him and the two of you should work together for your health.  I'm always reading and trying to find things that may help and when I think I've found something, I pass it by my doctor first.  We are a team.  I hired him to help me be as healthy as possible and we work together.  
Lastly, keep that chin up and keep a good attitude.  If you keep thinking about pain, you will hurt more, be very unhappy, become more depressed, etc.  Take one day at a time.  You certainly can handle that.  Find things that you can really focus on and the pain will fade some, too.  
I hope you will feel much better soon.
Forum Moderator/ Fibromyalgia
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

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