Help- Rheumy took me off meds

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Speppy
Regular Member


Date Joined Aug 2008
Total Posts : 28
   Posted 8/28/2008 7:19 AM (GMT -7)   
Help please ...

I have been having a really hard time and wanted to check in with you guys but my lap top died! Ugh. Saw my rheumy Tues and told him of my major complaints...insomnia, daytime fatigue, pain, headaches, nausea, clumsiness, hard time getting up in the morning, hot flashes, chills, sweating...not functioning in general. Horrible PMS and painful periods. I have had fibro over ten years. I go through these spells of sickness...and this time I have been suffering for months. Really bad this last month. I've been on every anti depressant. Cymbalta, Lyrica and pain meds...muscle relaxers, etc. I am kinda anti anti-depressant for me because my body is SO sensitive. I had a horrible time getting off cymbalta.

Rheumy said Tuesday he wants me to get off Ultram, Vicodin and Inderol for migraine prevention. He also said not to take anything to sleep except muscle relaxer (Zanaflex), so I said what do I take for pain? He said Tylenol Arthritis and Advil. This started Tuesday. I feel like I am losing it. Not to mention it is that time of the month and I feel like double poop for that. My job is freaking out. I am crying and inconsolable. I am considering going off my birth control pill too because when I go off it my body is a mess. Hot baths, heating pad... I am in so much pain in my wrists and ankles and in general. I am so sick.

Any ideas before I totally lose it? My Dr. wants to do a sleep study, wants me to see a psychiatrist and get new bloodwork. Seeing primary tomorrow to get referrals for those.

I left message for rheumy that I am SUFFERING. I want to pop a vicodin and stop the misery, but he told me not too...ugh.......

Thanks for listening so much.

Hugs
Speppy

Fibromyalgia since 1995 (dx 1998)
Chronic Fatigue, Migraines, TMJ, Carpal Tunnel, Insomnia, IBS, Neck Injury C5/C6, allergies etc etc etc...
Ultram, Vicodin, Ambien, Zanaflex, Xanax, Advil (and they don't work for me...), Zyrtec-D

'Be kinder than necessary because everyone you meet is fighting some kind of battle.'


hhh
Regular Member


Date Joined Jul 2008
Total Posts : 64
   Posted 8/28/2008 8:34 AM (GMT -7)   
Speppy,
why does he/she want to do this to you? You may be in withdrawal if you stopped your meds suddenly. Can you not keep taking them until you see the specialists?
Holly

searchingforanswers
Regular Member


Date Joined Jun 2008
Total Posts : 44
   Posted 8/28/2008 8:51 AM (GMT -7)   

 

Hi Speppy,

I know you won't want to hear this , but maybe the sleep study will help your doctor to figure out how to help you better. I am rather surprised that he didn't wean you off your meds a little more gradually. Maybe when you find the date of your sleep study, you will be able to find out how long it takes to get narcotics or whatever drugs they need to have out of your system and you will be able to have more time to do so.

 


 Bev...searchingforanswers
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
 
mother of four sons, grandma to five, wife to one wonderful husband
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
fibromyalgia since 1993
Cymbalta, Tramadol, Lyrica, Xanex
 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
 
 Love people and use things NOT love things and use people.
 
 
 He is richest who is content with the least....Socrates


getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40590
   Posted 8/28/2008 9:22 AM (GMT -7)   
Can you just go back to your regular doctor and forget about the rheumy? Was the vicodin helpiing you enough with the pain? I am so sorry to hear this, I think it is why I don't want to go to a rheumy. I am doing okay the way I am. I still have pain but it is tolerable to me. And if it gets bad on days, I just live with it.

Best wishes to you,

Hugs, ...Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


Speppy
Regular Member


Date Joined Aug 2008
Total Posts : 28
   Posted 8/28/2008 9:25 AM (GMT -7)   
Thanks ladies for your help. He is worried my fatigue and morning grogginess is affected by the ultram & inderol. He is weaning me off the inderol, but I was taking 2 ultram 50mg up to 3 times a day. And Tuesday he said I could just stop. I was taking xanax for sleeping and he stopped that too. I am just suffering so much. So much pain.

Dr's asst just called and said I can resume the ultram if I need to. I am so frustrated.

Thanks for all your help. I see the primary tomorrow to set up the sleep study and psychiatrist.

Hugs
Speppy

Fibromyalgia since 1995 (dx 1998)
Chronic Fatigue, Migraines, TMJ, Carpal Tunnel, Insomnia, IBS, Neck Injury C5/C6, allergies etc etc etc...
Ultram, Vicodin, Ambien, Zanaflex, Xanax, Advil (and they don't work for me...), Zyrtec-D

'Be kinder than necessary because everyone you meet is fighting some kind of battle.'


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 8/28/2008 10:41 AM (GMT -7)   
He may have a reason for stopping the meds.  He may be thinking that they are causing some of your symptoms.  Can you see if you can take ibuprofen along with the Tylenol?  That's what I do and the ibuprofen really helps me.  I can't just take Tylenol.  I've tried that and couldn't get out of a chair.  Also see if you can try the malic acid/magnesium supplements.  They really helped me and others with pain and fatigue.  I just bumped up the thread all about them. 
 
I hope you get some relief soon.  Be sure to do the gentle stretching exercises in the Fibro 101 thread.  They are easy and help keep your muscles from knotting up so badly.  Let us know what your doctor says tomorrow. 
 
Sherrine
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


Speppy
Regular Member


Date Joined Aug 2008
Total Posts : 28
   Posted 8/28/2008 10:54 AM (GMT -7)   
Thanks Sherrine,

I told him about the magnesium/malic acid and he said I can absolutely try it after the sleep study. He did tell me I can take advil & tylenol arthiritis together, but didn't say how much. I took 4 - 200mg advil + 2 - 650mg tylenol arthritis approx. 2x a day and it didn't seem to do anything. Did I give up too soon? 48 hours was all I could take. How much advil and tylenol do you take, and how often? I haven't been able to get out of bed or off the couch since Monday. My job is at their wits end with me. And I don't have ANY leave so I don't get paid when I miss work.

He does think the meds may be causing my fatigue and other symptoms. I just don't know why we went cold turkey on a pill I've been taking for like 10 years... nono

Thanks for your help. I look forward to your reply.

HUGS!
Speppy

Fibromyalgia since 1995 (dx 1998)
Chronic Fatigue, Migraines, TMJ, Carpal Tunnel, Insomnia, IBS, Neck Injury C5/C6, allergies etc etc etc...
Ultram, Zanaflex, Advil, Tylenol Arthritis (and they don't work for me...), Zyrtec-D

'Be kinder than necessary because everyone you meet is fighting some kind of battle.'


Sue2z
Regular Member


Date Joined Jul 2008
Total Posts : 368
   Posted 8/28/2008 6:16 PM (GMT -7)   
Your poor thing,  I couldnt cope without my pain meds from rhemy, muscle relaxants help me also but im only aloud them at night.  Keep trying with your specialist.  I had to see a phyc also but it turned out a good thing.  She put me on a mood stabilzer called zyprexa as norm antidepressants dont work for me and this drug made me so much better the pain lessoned alot.  Dont know why.  But I still couldnt cope without pain med.  I live in constant fear of what has happened to you happening to me.  Good luck.  Im least glad your on muscle relaxants although its not enough.  I am in mid flare up I cant manage either. cry cry   suez2
Fibromyalgia, ulcerative colonitus, arthritus, bi-polar
norspan patch, valium, prothiedon, lyrica


Piercings
Regular Member


Date Joined Aug 2008
Total Posts : 326
   Posted 8/28/2008 9:59 PM (GMT -7)   
Speppy, you might want to try to convey to the rheumy that not only are you suffering, but that you are in jeopardy of losing your job. This was something that I had to bring up with one of my doctors. I explained to him that "if he/we can't keep me 'functional' enough to be at work, that means I lose my job. If I lose my job that means that I lose my benefits. And if I lose my insurance that means that I stop seeing you. And if I stop seeing you, that means money out of your pocket too." When presented to him that way, he was much more cooperative on working with me.

I know how miserable it can be with the sudden loss of pain relief. When I lost my insurance alomost a year ago, I really thought I was going to lose my mind for the first few months till I got my new insurance. I'm in agreement with searchingforanswers about being surprised that they didn't wean you off. Stopping anything abruptly (whether it's a drug that causes withdrawl or not) can be a miserable experience. You have had relief from some of these feelings and to have them SUDDENLY again is like a shock to the system.

I'm sorry that it's been such a miserable experience lately for you. The only thing that I can say is that I hope that this sleep study actually provides them some amazing information that helps you down the road.

Sue2z
Regular Member


Date Joined Jul 2008
Total Posts : 368
   Posted 8/28/2008 10:37 PM (GMT -7)   
After reading some of the replies,  I agree with hassling your doc, he can prescribe.  I was angry at mine when I found out that he could of prescribe himself without a specialist involved.   sue2z

Fibromyalgia, ulcerative colonitus, arthritus, bi-polar
norspan patch, valium, prothiedon, lyrica


Sue2z
Regular Member


Date Joined Jul 2008
Total Posts : 368
   Posted 8/28/2008 10:40 PM (GMT -7)   
It sounds like you are having heaps of side effects to the meds thats why he took you off but he should never of totally stopped.Say to your doc that its to much stopping everything and ask his help.  

Fibromyalgia, ulcerative colonitus, arthritus, bi-polar
norspan patch, valium, prothiedon, lyrica


Lynn
Regular Member


Date Joined Jan 2003
Total Posts : 492
   Posted 8/29/2008 4:08 AM (GMT -7)   
My Rheumy won't prescribe pain medications. He provides my prescriptions for Sinemet and Humira period. Eventually my GP and I decided together Pain Management was a good choice for me. I cannot imagine being cut off cold turkey from my pain meds. At the very least he needs to explain in detail why you are not allowed relief with no appointments made ahead of time. Be firm! He works for you, his job is to help you not to put your body into shock from withdrawals.
Sincerely hoping for your better health.....
lynn~
[color=purple>Dx'd 1983 Crohn's Disease, COPD 2000, Psoriasis 2002, Fibromyalgia 2005 along with Cronic Inflammatory Disease 2005. Currently takeing Humira, Pentasa, Lomotil, Elavil, Sinemet, Skelaxin, Advair, Abuterol, Avinza, Percocet and Xanax as needed[/color]


alicat72
Regular Member


Date Joined Jun 2008
Total Posts : 79
   Posted 8/29/2008 7:20 AM (GMT -7)   
i am so sorry you are going thru this situation with your rhuemy....i stopped seeing mine because he was of no help at all....he would only script celebrex which did not work at all and made me sick to my stomach.....he wouldn't even script elavil!!!!!mad

my primary care doc is way more sympathetic....still she also wants me to see a pin management doctor because she has had bad experiences with patients who become addicted to opiate meds.....thats fine with me...i am on tramadol and it is ok....not great, but ok....

i hope you find some relief soon.......

Speppy
Regular Member


Date Joined Aug 2008
Total Posts : 28
   Posted 8/29/2008 7:59 AM (GMT -7)   
Ladies...thanks so much for all your replies. The rheumy told me yesterday that I can take the tramadol if I "need" to. So I took 2 yesterday, but last night I had a migraine. He is weaning me off Inderol (propranolol) because he thinks it is causing side effects, but I am taking it to prevent migraines, so if the migraines come back...ugh!! I take vicodin for migraines usually...but haven't been getting them lately (knock on wood). And now he says no vicodin. Mixed with the brain fog, all this is making me confused.

I am seeing the primary doc at 1245. My BF is going to come with me. I am not feeling so great. I tried to go to work this morning and I drove all the way there. I had an IBS attack and drove back home. I have been in bed, in pain and nauseated and on Immodium ever since. Now in pain and getting a headache.

Ok, let me go pull myself together and go to the doc.

Thanks again so much for your replies. I really appreciate the advice & support.
:-)
Speppy

Fibromyalgia since 1995 (dx 1998)
Chronic Fatigue, Migraines, TMJ, Carpal Tunnel, Insomnia, IBS, Neck Injury C5/C6, allergies etc etc etc...
Ultram, Zanaflex, Advil, Tylenol Arthritis (and they don't work for me...), Zyrtec-D

'Be kinder than necessary because everyone you meet is fighting some kind of battle.'


kelly71
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 8/29/2008 8:20 AM (GMT -7)   
Speppy,
 
First of all, I don't think I ever welcomed you, and I apologize for that.  I hate using the excuse that I've been busy, so I'll just say that life got in the way.  Yeah, I know-still an excuse, huh? blush   LOL
 
I totally agree with Holly (hhh).  You may be suffereing from withdrawals.  I am NOT calling you an addict, but if you've been on the meds for awhile, your body gets used to them.  So, in my opinion, your doc should have had enough sense to wean you off of the meds.  I don't know how long you've been on the meds, but any moron (sorry, doctors frustrate the **** out of me) should know to never cut you off cold turkey.
 
I'd strongly suggest that you see another doctor-or at least a pain doc who knows his or her stuff.  It always shocks me how little docs really know about pain management.  Why can't they understand that everyone is not a junkie?  And, this may surprise you, but I AM a recovering addict.  Maybe that's why I'm such an advocate for true pain mangement.  Trust me, I've had a lot of docs tell me to "get over it" when I told them I was a recovering addict.  I even had one who told me that he couldn't give me anything when I had a BROKEN LEG! mad
 
Anyway, I really do hope you can find relief and if there's anything I can do to help, please let me know-even if it's just talking-cause everyone knows how I love to talk. smilewinkgrin
FINALLY dxd on 06/13/08
Vicodin, Neurontin, Ibuprofen for pain-which doesn't help, BTW
Zoloft & methadone (NOT for pain) for sanity-which doesn't help, BTW
Klonopin for anxiety (Guess what?  Doesn't help!)
Chantix to try to quit smoking (started 08/20/08)
 
"I'll take the Chivas instead"
-Kelly Clarkson


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 8/29/2008 8:25 AM (GMT -7)   
Speppy, I take 600 mg of ibuprofen every six hours if I'm in a flare.  That makes 2,400 mg a day which, according to my doctor, is the highest safe level to take it.  I will take 1,000 mg of Extra Strength Tylenol every six hours if I'm in a flare.  4,000 mg a day is the highest safe amount for Tylenol.
 
I space these.  I will take the ibuprofen and then, three hours later, the Tylenol.  Three hours after that the ibuprofen, etc.  With that and the malic acid/magnesium supplements, I have control of my pain.  Golly, I hope this will help you.  Keep moving!
 
Sherrine
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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