strange reactions to medication

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3eyesofwisdom
Regular Member


Date Joined Sep 2008
Total Posts : 27
   Posted 9/18/2008 3:26 AM (GMT -7)   
Is it normal for meds to work wrong in fibromalgia patients. I have noticed nothing works like it should. I used to take tylenol, ibuprofen, or something else for headaches. I never found anything that would work. Then its like everything works backwards. Antidepressents seem to make me more depressed. alcohol makes me hyper and so i cant sleep. And the newest one. well i was given percocet to try. I heard stories about it. me hubby told me id be so loopy and tired i wouldnt care about the pain. Well i took it. it did nothing but make me itch. So it added to my discomfort. It didnt ease the pain, make me loopy, or tired. It was like eating a tic tac. Nothing. I find a lot of meds do nothing for me, or very little. nothing helps me sleep. Ive tried every sleeping pill i can hthink of and nothing. It may relax me a very minute amount, but even if im laying down i cant sleep. I am up usually 3 days at a time before i get any sleep, and then it is minimal. and also i think my body may be messed up the rest of my life because i was on gabapentin. When i started it is around when everything went bad. I know it is for pain, but it seemed to be causing me even more pain. i was constipated for three months. i could barely go even using enemas, prune juice, fiber, and laxatives. I know i may have ibs. i think gabapentin ruined my body. i am off it now and can go to the bathroom, but i am still having problems. i almost think if they gave me a pain causing depressant, id be happy and painless. its weird. im really glad i found this site. i read more info when i can. my experience with the docs has been horrible. i havent been able to keep one. its a long horrible story. Its bad enough to go through this when you have a regular doctor. but i keep getting dumped at the wayside and having to call lists just to find one to try. then i worrry they wont help me. it took me 5 months of throwing up every day to finally get anti nausia meds that dont help, and six to get anything to try for the pain. I am mad at the healthcare system. Im sure most of you have seen a lot of its flaws as well. I feel like i am never gonna get the help i need. i know its not nice to have this diagnoses, but a diagnoses at this point would ease my mind. even if it is bad, i would know what i was dealing with. it wouldnt be some mysterious thing that makes me wonder if i will wake tomorrow. im sorry i am so down. what does anyone do to help with the pain? well im gonna go for now.
jennifer

Piercings
Regular Member


Date Joined Aug 2008
Total Posts : 326
   Posted 9/18/2008 5:32 AM (GMT -7)   
It's not uncommon for fibros to be very susceptible to the side effects of most drugs. Usually they either do nothing at all or else we suffer all the side effects (uncommon ones or not). We also frequently either do have - or suffer from - IBS and or it's symptoms. Usually we have bowel problems.

My own personal experience with gabapentin is not as bad as yours, but it wasn't a positive one either. My surgeon was the one that had prescribed it to try and get rid of what he thought was nerve pain. He threw me onto 300 mg 3 times a day right off the bat. For the first few days the only thing that it did was make me dizzy and sick to my stomach all the time. I spent more time in the bathroom heaving than I did piddling. Once my body got used to it, then there was nothing. It didn't make my sick anymore, it didn't help at all, it did nothing. He decided to up the dosage to 400 3xday and still no change at all. Even when I went off of it cold without weaning/tapering there was no change. So, at that point is when I decided that there was no point in paying for a prescription that made no difference in my life.

During the summer months I'm usually able to get away with only OTC medications, the trick for me to get any real relief out of the OTC meds was to combine what I was taking so that I could get a cross hatch effect. I would take 2 tabs iboprofen, 1 tab of excedrin like, and 1 sodium naproxyn (aleve)...and then repeat every 4 hours. During the winter though when my pain levels go up, I have to give in and go to the narcotics.

Hopefully you will be able to find a doc that will not only listen but that you can stay with long enough to be able to get through the battery of tests that one has to, to be able to finally get a diagnosis of fibro. Yes, it's something that I don't wish upon anyone. But I can totally understand and appreciate the statement of 'just wanting to know what's wrong with me.'

I wish you the best on being able to get some answers.....

Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 9/18/2008 6:58 AM (GMT -7)   
Jennifer I'm sorry your having such a hard time getting medical help. Is it your ins that is the problem with keeping a doc??? I do hope you find one that will do the test necessary to rule out everything it could be besides fibro so you can get a dx. Print out a list of the symptoms in the fibro 101 thread and highlight the ones that you have and take that to the doc. and keep a journal of the pain and fatigue.
 
I have had problems taking meds for a long time because of different reactions so I do avoid taking meds unless I absolutely have to. The last time I took benadryl for an allergic reation it made me hyper. Some of our bodies just don't tolerate meds well. It's another sad fact of fibro.
 
luv and hugs
Marlee
 
 
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin


GamJill
Veteran Member


Date Joined Jun 2008
Total Posts : 1279
   Posted 9/18/2008 7:34 AM (GMT -7)   

Hi Jennifer, and I don't think I have welcomed you yet- so a big welcome!

I'm so sensitive to medications, and have to start on a very minimal dose no matter what it is. I think there should be something you could find to take for depression and it not cause more depression. Have you tried alot of antidepressants? I know there are so many out there now that may help you. I take Zoloft and would not be without it. It makes a big difference.

Sorry to hear yet another story on the healthcare system and it being so difficult to find a good Dr. Keep going- my Dr. is a gem. It makes everything easier when you are in good hands.

I take Tylenol 4,000mg most days for pain and have Darvocet for back up. I also have a prescription for Lyrica, but have not started it yet. I was just diagnosed spring of this year and fumbling along myself.

Finding a support group has helped me so much also and this happens to be the best group. Let us know how your doing. We care! GamJill

 


 
 
Fibromyalgia, Depression, Anxiety, TMJ, Arthritis/neck
 
Zoloft, Tylenol 4000 mg., Zanaflex


Kythe
Regular Member


Date Joined Jun 2008
Total Posts : 261
   Posted 9/18/2008 7:43 AM (GMT -7)   
You are not alone, I have a very hard time with medications as well. Either they don't work at all, or the side effects are too severe to live with. Or sometimes they don't work as well as having bad side effects.

I pretty much can't take anything with sedating side effects because it will make me way to sleepy to function. Even if I take it at night, it will effect me throughout the day. I can't take antibiotics because they mess up my digestive track too much and I stick to herbal antibiotics.

I've also had problems with various meds making my hair fall out and even though I'm not on them, my hair is still quite thin. I'm not supposed to look like this at age 24. cry

I've also had medications that have done really awful things to me, there was one that made me gain 40lbs in a month, another medication gave me an iron deficiency, and there was another one that made me lactate and gave me parkinson's like symptoms.

Needless to say I just avoid medication unless absolutely necessary and I'm always more open to natural healing options. I really hate it that the health insurance won't cover herbal supplements.
~Kythe
____________


Allergies, Asthma, Anxiety, Depression, IBS, PCOS, Fibromyalgia


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17100
   Posted 9/18/2008 10:35 AM (GMT -7)   
Hi, Jennifer.  I'm sorry you are having so much trouble with medication.  I take ibuprofen (with food) and Tylenol to help with pain.  The ibuprofen does nothing for me unless I take 600 mg at a time. When I'm at my worst, I take 600 mg every six hours around the clock.  I will also take two Extra Strength Tylenol (1,000 mg) in between those ibuprofen doses.  I don't take all of this together.  I want to give my body a chance to absorb the medication I have taken and see if I need more.  If I do, then I will add the Tylenol.  I try to take as little medication as possible.  You should never take more than 2,400 mg of ibuprofen a day and 4,000 mg of Tylenol a day.
 
I also take malic acid/magnesium supplements to help with pain and fatigue.  There is a link in the Fibro 101 thread all about them.  You might want to read that and think about it.  Using this and the above medication has kept me in control of the pain.  It hasn't made me pain-free.  I don't expect to ever be pain free.  Sometimes I think that is a problem.  People take too many things to be pain-free and then run into a lot of problems.
 
Take advantage of hot showers and moist heat. Make a rice bag that you can heat in the microwave.  They give off moist heat.  Or, you can buy a Bed Buddy.  They do the same thing.  I found mine at Walgreens but I'm sure you can find it other places, too.
 
Keep moving and doing light stretching exercises.  This helps with the pain.  You don't become so stiff.  The stretching exercises are in the Fibro 101 thread too.  There is a lot of good info in that thread and that's why we send all newbies to it when they first come on the forum.
 
Next time you are looking for a doctor, call first and make sure that they treat people with fibromyalgia.  There are doctors out there that don't!  They don't understand this illness so they assume it's all in our heads!  We know it isn't so you need to find a good, compassionate doctor that does.  Check out the Yellow Pages, too.  Lots of times doctors will list the illnesses they treat.  A good doctor is worth their weight in gold!
 
I hope this has helped you and I hope you get some relief soon.  Keep looking and trying things and I'm sure you will find what helps you.  Try to keep a positive outlook, too.  Being negative doesn't help and it will make you more miserable.  Look around at the many blessings I know you have.  We all have blessings and things to be so thankful for.  Also, don't forget that you have a wonderful sense of humor that is there to help you.  Laughter helps a lot too.
 
Let us know what you do.  We really care.  Hope to hear more from you soon.
 
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


nrthngrl
Regular Member


Date Joined Jun 2008
Total Posts : 56
   Posted 9/18/2008 7:31 PM (GMT -7)   
HI Jennifer and so sorry to hear that things are not going so well. I too have alot of problems with meds. I became allergic to ibuprophen and so i cannot take any other anti inflamatories either in fear of a bad reaction, any "sedating meds" do not make me sleepy with the exception of valium (diazepam) in large doses. If I take codiene or demerol I end up kinda "wired" and have started to react to tramacet, percocet and the like with itchiness. Any meds I take I have to start with a half dose to see how it is going to affect me and with tylenol it does absolutly nothing for me in any does, large or small.
It is just one of the many bonuses that comes with fibro.
I do hope you are able to you are able to find relief soon, and remember you are never alone and we understand where you are coming from.
IBD(undetermined) 04-'07....Gastritis 04-'08....Fibro & CFS dx 06-'08....
 Asacol & Buscopan-IBDPantoloc-Gastritis, Nortriptyline-Fibro/CFS, Pramipexole-Fibro,  
Diazepam, demerol, codiene for pain
b12 inj, fish oil, folic acid, acidophilus. 


anonymouse
Regular Member


Date Joined Jul 2008
Total Posts : 40
   Posted 9/18/2008 9:26 PM (GMT -7)   

Hi there 3eyes.

I am allergic to so-oo many meds and I have been on possibly EVERY single one. I can't even take vitamins. :( Anyhow. After trial and error my docs have found a mixture for me that has me normal. I can't take nsaids. severely allergic. Lyrica messed me up. ambien never put me to sleep. I am happy with what I am on and they do what they should do. (I take 4 different ones a day) Anyhow. It took years to find the wonderful Dr.'s I have now so I understand your dilemma. It was very frustrating and a total fluke that I lucked into my docs but I guess everything happens for a reason. An official diagnosis brought relief but I have so many other issues along with the fibro-all related) I don't suffer from depression and I don't have IBS like some of the others but up until 5 years ago I had never even taken a Tylenol for a headache. I never took meds unless it was an antibiotic for some seasonal illness going around. At times it floors me that I am taking the meds I am. But they are working and I am extremely sensitive to medication so I am praying they continue to work. I hope you find what helps you.

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