Starting all over again!?

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Pondchik
Regular Member


Date Joined Feb 2005
Total Posts : 64
   Posted 12/9/2009 12:10 AM (GMT -7)   
My doc has left and a couple of new ones have taken his place.
Long story short...I am a 55 yr old woman, I got diagnosed w/fms in 2004, doc and I went thru all of the common meds to treat fibro...nothing really worked as I seem to be sensitive to most new meds...(back in the day, I could not even take birth control pills.) It ended up being that what worked for me would be percs-daily and morphine for break thru pain only. Valiums for anxiety...15 a month. I have had this concoction for the past 1 1/2 yrs, no addiction issues... (I could at least be a productive human being. Like get out of bed and shower, do a little laundry, cook a couple of meals, or a little shopping...I got usually close to 8 hours of being able to "function". Where before meds, I was in bed most of the day, in pain and no energy. I was elated...I felt life was worth living again.)Doc told me he would talk to the ones replacing that I am not an addict and there should be no issue. Well, can u imagine when I was told by new doc, (who seemed to be out of med school 20 min ago) that she does not believe in treating me this way in other words, she will not give me Valiums again, 15 a month, but will give me Klonipin...I took that and swelled up like elephant!! This is all in my records! I would be going back to pain specialist who told me that my pain is all in my head...again, it’s in my records...and folks. BEFORE you judge, the rest of the facts are that I have enuff morphine for ONE PILL A DAY!!!!!!!!! Percs 4 a day. I would think this is HARDLEY enuff to be addicted to. I WAS addicted to cigarettes, so I know what an addiction is!
Pain was so intense that I ended up going to em room last nite. They obviously did not give me meds other than flexeral and all i could do today was NOTHING...it makes me so sleepy and heart pain/chest pain and wicked headache, this is on half one.
I know that I can find a new doc, but what do I do in the mean time???? I am in friggin pain, my anxiety level is sky high, I cry all day long because I feel my body just locking up more and more each day, can't sleep. I feel my old life creeping back.
What about my human rights????
I don't know what to do about finding a doc who will give me back my meds...how do u ask without sounding like a junkie looking for her next fix?
Any suggestions are welcome and thanks for your time.
Thanks for letting me vent!

Jeannie143
Veteran Member


Date Joined Apr 2004
Total Posts : 6056
   Posted 12/9/2009 8:40 AM (GMT -7)   
Can you contact your old physician and ask him/her to lobby the new doc for you? You could also start a "pain journal" that tracks your pain levels, your home intervention (yoga, ibuprophen, aspirin, tylenol, hot packs, muscle rub cream) and the results. This will give you ammunition for the next doc appointment, regardless of whom you see.

How long ago did you see the pain specialist? If it's been a while they may have changed their understanding of fibro. Is there a college with a med school in your state? Sometimes they will be more understanding and then can give you a referral to a local doc who has the same philosophy about pain.

Also, there are treatments available for fibro that don't involve pain meds. Are you on an SSRI? If not you might want to ask your doc for one. They really help with the pain levels. Wish I could be more helpful.
~ Jeannie, Forum Moderator/Diabetes & Fibromyalgia
I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."- Elizabeth Kubler-Ross


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 12/9/2009 9:03 AM (GMT -7)   
Pondschick, I'm so sorry your pain is so bad. I agree with Jeannie that you might want to
try a SSRI. I am on Savella a SNRI and found it helps me. Flexeril helps when I'm flaring.

Daily exercise has also knocked down my pain levels. It helps with the stress and stress
causes more pain. I found by walking daily, my leg achiness has improved greatly.

I am hoping you are able to get the pain relief you need. Sending gentle hugs.

Robin
MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 


kathydownunder
Regular Member


Date Joined May 2009
Total Posts : 447
   Posted 12/9/2009 9:16 AM (GMT -7)   
I feel for you and have been there my Doctor retired due to ill health, he wrote a wonderful letter to a new Doctor for me. Well lets say it was a disaster she was hopeless. She never treated the Fibro just the oppersite to you she handed out tablets like drinks of water almost double what I had been given. Then for some reason she changed her mind suddenly and i was left short even for small doses, in the end I changed Doctors eventully to find one who helped me no end and we worked on finding meds that worked for me. For me I have found that sleep and stress if I can get enough sleep I can deal with stress. Valium does not work for me no matter how high the dose instead I take Baclofen. This has made a wonderful change in my life, the difference being I now have one outside the house, I even went out DANCING last weekend and was not in the least bit sore the next day.
Things will get better this was the only thing keeping me going when I was at my worst, it may take time but look for a new Doctor I ask before I see them. if they do not deal with Fibro patients then I will not see them.

Kathy

Fibro, chronic fatigue, migraine, ibs

Pondchik
Regular Member


Date Joined Feb 2005
Total Posts : 64
   Posted 12/12/2009 8:11 PM (GMT -7)   
Hello Jeannie,
Can you contact your old physician and ask him/her to lobby the new doc for you?
By accident i was assigned the wrong doctor...one that was not talked to, I have appointment with that doc on the 21st!!

You could also start a "pain journal" that tracks your pain levels, your home intervention (yoga, ibuprophen, aspirin, tylenol, hot packs, muscle rub cream) and the results. This will give you ammunition for the next doc appointment, regardless of whom you see.
That is a real great idea!! I have soooooooooooo many meds, rubs,pain patches, tens unit, yoga, meditation, music, when days allow, gentle excersise/walking/up and down stairs. Massages especially for the trigger points, heating pads, warm baths, hot water bottle, herbal meds, chiropractor, acupuncture...which is actually real helpful unfortunately for only about 2-3 days!! But that is better than nothing right?? lol

How long ago did you see the pain specialist? If it's been a while they may have changed their understanding of fibro.
here is the funny Jeannie, it was only about 2 yrs ago!! i just started to do some searching to find one that will also accept medicare.

Is there a college with a med school in your state? Sometimes they will be more understanding and then can give you a referral to a local doc who has the same philosophy about pain.
will be checking that out as well!! Good idea!

Also, there are treatments available for fibro that don't involve pain meds. Are you on an SSRI? If not you might want to ask your doc for one. They really help with the pain levels.
I have tried so many and they make me sick one way or the other...swelling, vomiting, dazed, groggy all day, not able to get out of bed, very aggressive where i want to kill someone, heart palpatations, nausea, dizzy, feeling like i am drunk, mental confusion, being in a haze...all on top of fibro fog.
the flexeral i got at the hospital the other nite gave me heart palpitations, sweating...tightness of chest...almost went back to er and then nightmares, confusion when i finally did wake up, drunk feeling when i was able to walk or stay awake, it took about 16 + hours for it to wear off without feeling like im going to fall. I only took half of dose prescribed too! I am supposed to take one at bedtime and one in morning...I can't be expected to live feeling like that am I!!??? lol turn shocked shocked nono
I have tried so many, lets see...gabapentin, elavil, baclofan, skelaxin, buspar, ativan, tramadol, ultram, fentanyl patches, and many more, but just can't think of the names .... anti inflamatories i can't take do asprin allergy. i can take only so many percs b4 i get sick to stomach...jeeeesh
Wish I could be more helpful.
R u kidding u had great suggestions, thanks a lot Jeannie!

Robin,
Daily exercise has also knocked down my pain levels. It helps with the stress and stress
causes more pain. I found by walking daily, my leg achiness has improved greatly.
I try to do that on a daily basis too, it does help sometimes, other times it makes it worse.

I think if i was able to get some sleep it would be a good thing, but even sleep meds don't work for me...on the first night they knock me out but after that it does not work...
thanks for the hugs...and right back atcha!!

Kathy,
She never treated the Fibro just the oppersite to you she handed out tablets like drinks of water almost double what I had been given. Then for some reason she changed her mind suddenly and i was left short even for small doses, in the end I changed Doctors eventully to find one who helped me no end and we worked on finding meds that worked for me.
I think that was with this doc too, she looked like she just became a doctor...and for other issues i had, she would have given me about 4 prescriptions for those all worse than than the problems.

For me I have found that sleep and stress if I can get enough sleep I can deal with stress.
I CAN'T SLEEP!!! I will be exhausted, like now and can't fall asleep...usually a 1/2 val will relax me enuff to sleep for about 2-3 hours if i am lucky...then its toss and turn for a couple of hours, then sleep for a couple...and on and on.
I notice with sleep if i get some...meaning about 4 hours without waking up, i can do a little better but those r far and few in between... sheeesh, :)
I took baclofen for a while too, but then I started to get heart palpitations so i had to go off them...
That is such a GREAT tip Kathy, I never even thought of that! Of course, oh my, ask if they have ever treated fibro...and how!!
LoL, how easy is that!!!
I will not give up...just make more trips to the er...
Ladies, thanks so much for your great suggestions and your precious time!

Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 12/13/2009 7:54 AM (GMT -7)   
I'm sorry your going through this. When we finally find what works for us the last thing we need is to have someone take it all away from us. They don't understand what we have gone through to finally find something that works.
 
I'm going to have to call my doc for a refill on vicodin before Christmas and I know he really doesn't want me on it but it does knock the pain level down some and I take very little at a time, a half of a 5/500 pill a day. I hope he doesn't give me any problems over refilling it cause I have enough going on to deal with right now. If they could only spend a few days in our bodies they might get it.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium, Osteoarthritis and Celiac
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches, Carafate and Prilosec
 
Vit D/calcium


Pondchik
Regular Member


Date Joined Feb 2005
Total Posts : 64
   Posted 12/17/2009 9:55 PM (GMT -7)   
Thanks for your understanding.
Saga is still going on, i asked that the doc would please call today and she did not even call me.
I have spent most of the days in bed, don't have energy, can't sit cuz it hurts soooooooooooo bad so i am home from work again...thanks so very much for your compassion doc witch. Might as well just forgot about holidays this year.
My holiday season really bites the big one and i am just so friggin greatfull to these wonderful compasionite doctors. Why did they become a doctor...to do what they think is right or to help people?? Geesh
Thanks for your support ladies, it does feel good to know there are others who do get it and i am very greatful!!!!
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