I don't know where to turn- I'm hopless please help.

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SadSickTired
Regular Member


Date Joined May 2009
Total Posts : 99
   Posted 9/23/2009 2:11 AM (GMT -7)   
Since being dx'd with fibro and raynaud's I have tried so many different drugs that haven't helped or have actually made things worse.  My rheumy is nice but very flat and bland.  I don't know if she understands how bad and scared I feel even though I have told her.  I asked her about pain management (I am on Vicodin now 1,000mg 3 times a day with Neurontin) and she told me that if I wanted to just deal with the pain management that I would have to talk to my PCP since he is the one that gave me the Vicodin (I started on the Vicodin for pain since I hadn't been dx'd yet and its kind of a generic take care of all kinds of pain)  I have been on the Vicodin since June and I only take it as prescribed (sometimes less if its a good day).  I went off the Neurontin a couple of times to try other things that my rheumy prescribed  since the Neurontin on its own wouldn't take the pain away completely and I still needed the Vicodin.  The Neurontin seems to be the only non-narcotic that agrees with me even a little.  I have tried Flexeril, Mobic, Cymbalta, and Lyrica. 
  • Flexeril and Mobic gave me the jitters and insomnia and made the pain and burning literally unbearable.
  • Cymbalta made me nauseous, dizzy, vertigo- let's just say it was bad.
  • Neurontin can't get the job done on its own.  Am I crazy to want to stay on the Vicodin/Neurontin combo since it works really well?  Or is there something better?
I don't want to try anymore anti-depressants or relatives of (I am already on 200mg    of Zoloft/day and it really agrees with me) I am happy with my current script.
I feel as if I am at the end of my rope because I have tried everything my Dr. has told me to and I feel bad.  In general I have a really bad experience with medication, and I mean beyond the normal "lets get aquainted" side effects that wear off in time.  I mean "worst night of my life" side effects and pain.
I really don't know what to do.  I am desperate for help and you guys are the ones I trust- even beyond my Dr's because you have and are going through it.  Your experiences are real not what the books and drug companies tell me I should feel.  I would really appreciate any advice you can give me.  Normally I am really an upbeat person with a lot of faith and determination.  After this last try, I just seem deflated.  Please, please help.
 
Thanks!
   Trish
 
Dx'd with Fibromyalgia, High Blood Pressure, TMJ & Migraines
Meds & Supplements are Vicodin (as needed), Neurontin (300mgs 2/day), Cymbalta (60/day), Atenelol (50 mg/day) Biotin (5,000mcgs/day) & Yasmin (continuously).  Oh and a LOVELY retainer for the TMJ! 
 


SassyMyKitty
Veteran Member


Date Joined Apr 2009
Total Posts : 673
   Posted 9/23/2009 6:24 AM (GMT -7)   
Trish,
I think that if you do well enough on the Vicodin/Neurontin combo, then you should stick with it. If something works for you, then why try other things? If you can function with that combo, and it makes the pain at least bearable, then I would stick with it. If meds work for me, then I stay with them, if they don't work for me, I try to find something else that works. I am sorry to hear that you are going through such a rough time. I hope things start going better for you. Well, I'll talk to you later. *soft hugs* Take care. Keeps us posted.
Be who you are and say what you feel because those who mind don't matter and those who matter don't mind. Dr. Seuss
 


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 9/23/2009 7:10 AM (GMT -7)   
Hi Trish, I feel your frustration, I've been there. When we are hurting, we just want relief.
Today I am flaring so I can relate to the pain. Cymbalta gave me nausea, but Savella worked
for me. I just took a flexeril and in about a half an hour, I know it is going to take the edge off
my pain.

All of us are so differant in what meds we can tolerate. I took Vicodin for 9 months before
I had my back surgery, it helped with the pain but I hated the way it made me feel. I can't remember what dosage I was on but know it had to be increased to get relief.

Hot baths feel wonderful, so I know I'll be soaking soon. I plan on doing some gentle
stretching too, my muscles get really knotted up when I am flaring. Darn this crazy weather!
I have been working with elastic bands and small hand weights trying to condition my muscles.
When we are hurting we tend not to excercise like we should. I am careful not to overdue.
Because I am flaring today, I certainly am not going to be using the weights or the bands.

I wish I had a magic pill for all of us. All we can to is take one day at a time.
Trish I hope you can find some relief soon. Maybe talk to your PCP to see what your options
are.

Wishing you the best!

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


MT Lady
Veteran Member


Date Joined Jul 2008
Total Posts : 955
   Posted 9/23/2009 8:32 AM (GMT -7)   
Hi Trish,
I have been on Vicoprofen (it is vicoden, but instead of tylenol mixed in, it has ibuprofen, just works better for me than the vicodin) and just recently started neurontin. My doc told me that neurontin needs to be taken every day in order to get the full effect; in the past, I would take in once in a while on a bad day. I am now finding that since I've started the neurontin, the horrible nerve pain I use to get during the night in my back no longer wakes me up! I take the neurontin, just one pill before bedtime. I LOVE that pill!
As others have posted, we are all different and different things work for each of us.
For me, the weather has a huge impact on my flares, mainly the barometric pressure. Change of seasons is a rough time, and fall seems to be one of the toughest, for some reason, so I am flaring now. I do find that even though I was diagnosed over 20 years ago with FM, when I am flaring, when the pain is this bad, I have a tough time dealing with it and it does affect my mood. I try to remain positive because I know sadness only leads to depression and going to a place that's hard to get out of.
I wish you well,
Miriam

Fibromyalgia, Osteoarthritis, scoliosis, back problems, hypothyroidism.


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17094
   Posted 9/23/2009 9:22 AM (GMT -7)   
Trish, I'm sorry you are having to go through this.  If you find that you can function with what you are taking, then I'd stick with it.  Rarely do we get pain-free.  I know I haven't. 
 
The stretching that was mentioned would be good, along with the hot bath or showers.  You do need to keep moving or the pain will be worse.  Walking is a good gentle exercise for us.  Pace yourself, too.  We can't do what we used to in the same time frame.  Just space it out a bit.
 
Have you tried the malic acid/magnesium supplements?  They don't help everyone but they have helped me and other members on this board with pain and fatigue.  There is a link all about them in the Fibro 101 thread.  Also, if you are deficient in vitamin D3, you can have more pain and fatigue.  Again, there is a link in the Fibro 101 thread about this, too.
 
All of the above, in combination, could make a difference in your pain.  I do hope you start feeling better 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


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 9/23/2009 12:15 PM (GMT -7)   
Where did my post go??? rolleyes
 
Yesterday morning I woke up at 5:20 and had to part with the bed before 6:00 cause of pain and my DH asked, "you think it might be time for pain meds"??? I think he is right, I've been very lucky to have gotten by all these years without them but I'm not going to suffer anymore than I have to. I have vicodin in the cabinet, just in case, and I have a rx for neurontin. I think I will start with the neurontin and see if it helps first. My sister swears by it for her diabetic neuropathy.
 
One of the reasons I haven't tried them is cause of all the bad reactions I have had to meds but my rheumy is so understanding about my medphobia and tells me to try just a little at a time to see what is going to happen before I take the whole thing.
 
I'm one of those that probably don't need to be on something all the time but just when I'm flaring.
 
I will admit that I haven't done research on different narcotics as yet since I haven't needed them. We need to function the best we can and whatever it takes for us to do that safely is our choice.
 
Today I have tried the hot masage shower and I have lidoderm patches on my hands since they are the worse source of pain and I will always try the tricks we have up our sleaves for pain relief before I resort to narcotics. I haven't gotten my TENS unit out yet today but I may have to.
 
I can't take the vit D by mouth so my rheumy is looking into vit D/calcium infusions for me.
 
Good luck to all that is flaring.
 
Miriam this change in weather is not helping either one of us any since we don't live that far apart.
 
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


getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40573
   Posted 9/23/2009 12:33 PM (GMT -7)   
I have noticed a little bit of discomfort in the change of weather. It is really humid here and suppose to rain over the weekend. It rained some last night. Yesterday I managed to go for a walk with a friend and also walk my dogs. The job has been going well too.

Just thought that I would chime in.

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


manyembers
Regular Member


Date Joined Dec 2006
Total Posts : 424
   Posted 9/23/2009 2:29 PM (GMT -7)   
Hi Trish,

I'll share what has worked for me, and start with a question: Have you thought of considering seeing a naturopath? I've contacted several and each one has said they have had significant success treating people with fibromyalgia. They use natural means - diet, herbs, allergy testing...etc. I have never used meds. but spent ten years or so researching natural alternatives and diet and through this alone as well as rest/lifestyle management, have eliminated most of the pain aside from when it acts up due to cheating on my diet, or overdoing it etc. - and fatigue is much better too. So there is hope. But you need to decide for you what you feel up to - changing lifestyle to all natural take a lot of time and effort. THat said, diet wise, you can make changes in little steps. The main things to avoid that make a world of difference for me re. pain levels are: white sugar, dairy and wheat. It's generally said that caffeine, alcohol and white flour are best to avoid if one is suffering from health issues as well as preservatives like msg etc.

Many people with fibro. are also chemically sensitive - meaning the body has trouble detoxifying the chemicals in common things like perfume, household cleaners etc. Going all natural with your laundry and cleaning products will also help give your body a break from dealing with the added burden of the nasty chemicals in these things.

If you do a google search on candida diet, this will give you some ideas too. I don't recommend doing this diet strictly long term because it is very restrictive and I think could lead to defiiencies, but maybe short term, just to give your body a chance to detoxify a bit. Detoxification is key to people with fibromyalgia. In general, candida diet recipes will offer you some healthier alternatives or some ideas to tweak some of your favorite foods so they are more friendly. For example, I learned to make tapioca pudding, but to replace milk with coconut milk and sugar with stevia or brown rice syrup (both are healthy sweeteners available at health food stores.)

In a nutshell, if you research natural remedies and fibromyalgia online, you'll get a lot of information. And if there are some things you would like to try you can run it by your doctor to make sure it is safe and won't interact with your meds. My doctor, like most, admits there isn't a lot of medical research to back up the supplements I use. However, he can still tell me what is safe or not, and he supports me using whatever is working to make me feel better if it is safe to do so. So it will depend on whether or not your doctor is open to these things. But agin, if you can afford it, the best way to go seems to be to find a qualified natural health practitioner as they can do very specific tests and measure for imbalances and defiencies beyond what regular medical tests can do and tell you more specifically what diet changes will be helpful and what supplements are the best fit. In looking for a naturopath, make sure they have gone to school and are a registered ND and have their license for that (some don't, so you want to check up on them.)

Hope that helps.

sincerely, manyembers

beanley
Regular Member


Date Joined Sep 2009
Total Posts : 124
   Posted 9/23/2009 2:31 PM (GMT -7)   
(((((trish))))) i feel for you, hon. i was there with my migraines not many months ago.

i know u dont want to try other antidepressants, BUT...

u havent tried one of the old style tricyclics like Elavil generic name amitriptyline. i am also the side effect queen but i'm ok with elavil. it's best taken at night to help promote stage 4 sleep which then reduces the pain AND fatigue the next day. i've been on it 5 years and its been a godsend 4 me.

might be worth a try. and i agree u should stick with the vicoden/neurontin combo cause it works for u. adding elavil shd b ok as it uses a different pathway in the body.

good luck and feel better
fibro, migraines, ibs


Littleneck
Veteran Member


Date Joined Mar 2009
Total Posts : 599
   Posted 9/23/2009 4:14 PM (GMT -7)   
Hi Trish, don't get downhearted - we all understand. I think most of us wish there was one magic pill to do it all!! I know I do. I have only been taking meds since February this year and have already tried 3 different combinations. Right now I take 4 meds, which finally seems to put me in a better place than before: neurontin, Cymbalta, tramadol, and baclofen. But I still wake with my lower back hurting, or my arms hurting... the Cymbalta makes me sweat... My rheumatologist is professional, very experienced, and very busy, so he leaves all the med prescribing to the primary doc, who is very conservative in his approach to pain. He is reluctant to start me on narcotics because I'm only 41, and knws that with diet, exercise, and getting enough sleep (and a couple of "bed buddies," rice-filled warmers) I can keep managing. I have changed my diet a bit, trying to eat less and eat better, to accommodate this d*** illness. I stretch every day and try to be consistent.

I look at fibro like I am on a road that is running parallel to my original life path - when I deviate too much from it due to pain, discomfort, etc. it's time for me to work a little harder with the help of meds, exercise, and relaxation, to get back in the same direction. On the good days I can cross my original path. On the bad days - I don't even know where I am. I am a very positive, upbeat person as well, so this fibro must be something to be able to bring us down, huh. I'm sorry. Don't give up.

SadSickTired
Regular Member


Date Joined May 2009
Total Posts : 99
   Posted 9/24/2009 2:22 AM (GMT -7)   
Everyone,
You all gave me some great ideas and made me feel a lot better. The entire time that I have been on the Vicodin (since June) I haven't ever taken more than prescribed or more frequently. When I call the doctor (my primary is amazing. on here I actually refer to him as Dr. Great Guy- and he's cute too!) he hasn't had a problem extending my script (usually one with one refill) to make sure that I am still in contact with him regularly. But I guess I really needed, in addition to some new things that I could try on my own, I really needed to hear that (don't laugh) that I wasn't a pathetic junkie for taking the Vicodin and Neurontin regularly if it worked. I feel so bad so much of the time and I take so many ( 5 scripts and 2 vitamin/supplements) pills. And I know it shouldn't but it bothers me that so many people that I work with think that I am a hypochondriac since I "don't look sick" I must be overreacting. I guess my little melt down has been coming for a long time because I just don't have a support system here where I live. I am all alone. My family is pretty self involved and kind of tired of hearing that I am feeling like crud everyday. Except my Mom, who is amazing but has a pretty full plate herself so I feel bad adding to it. So I just absorb everything myself for the most part. Just having so many people here respond to me makes me feel so good. Thank you, you have helped me more than you can ever imagine.
Thanks!
   Trish
 
Dx'd with Fibromyalgia, High Blood Pressure, TMJ & Migraines
Meds & Supplements are Vicodin (as needed), Neurontin (300mgs 2/day), Cymbalta (60/day), Atenelol (50 mg/day) Biotin (5,000mcgs/day) & Yasmin (continuously).  Oh and a LOVELY retainer for the TMJ! 
 

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