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I Stopped Lyrica
9 Replies
Ena - December 8

iam feeling bad , but i dont know if what i had done is right or wrong?
iam afraid from the the side effects !!!
so i decided to stop any and all drugs ?

 

Fantod - December 8

Ena - You can NOT stop Lyrica without a doctor helping you. It is very dangerous. The drug makers must list all side effects even if they are very very small. You will have a better life if your take your medicine. Take care.

 

Rahiin - December 8

Fantod is right Ena, Lyrica does wonders for me and its ok to take it for long periods of time, of course if your doctor says so because I do not know all your conditions.
When I suddenly stopped taking Lyrica my body went haywire. I would not suggest that you do the same, its side effects are very small compared to other medications.

 

greenie - December 14

I was just diagnosed with fibo. and was put on 75mg Lyrica to start! My head was swimming, I was so dizzy I couldn't get out of bed. And I crying I felt so awful. I went down to 25mg. and still felt awful. I know there are other things to try for those of us who are so sensitive to allopathic drugs. Any advice for new fib. woman. would be most welcome.

 

Fantod - December 14

Hello greenie and welcome to the board!

This is the most comphrensive site on the Internet for information about Fibromyalgia (FMS). There is a lot of good information in the blue boxes on the lefthand side of this page. And, we have a good group of people available to offer support, suggestions or just listen when you need to rant.

Fibromyalgia (FMS) is a disorder of the central nervous system. It is correctly referred to as a syndrome. The mechanism that causes it is not understood. There is no cure but it can be managed with certain classes of prescribed medication. OTC remedies like Tylenol do not work for the type of pain associated with FMS.

Fibromyalgia is recognised by the National Arthitis Foundation, The Centers for Disease Control and the World Health Organization.

One of the reasons that you are in so much pain is that you are not getting restorative, deep sleep. FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles require deep sleep in order to repair themselves from the days activities. No deep sleep means higher levels of pain. Treating the sleep issues associated with FMS is a crucial part of treatment. You should be on a sleep aid like Amitriptyline.

There are now three prescribed medications used to treat FMS. You have probably seen the ads on TV for Lyrica. The most common complaint associated with this medication is rapid weight gain. It may not happen to everyone but when it does most rheumotologists are not proactive about changing medications. The second choice is Cymbalta which addresses both the pain and depression associated with FMS. I use Cymbalta myself and have had pretty good results. The third and newest choice is Savella. It has been used in Europe for decades and was approved for use in the USA last year. It is going to take time and a lot of tinkering to find the right combination of medication and doseage to make you more comfortable. At a bare minimum, it will take two weeks or longer once you start on something to notice any difference.

The longer a chronic pain cycle continues, the harder it becomes to manage or stop. You need to allow time for any medication to build up in your system and settle your over active pain receptors down. I would recommend that you try to stick to whatever drug regimen that your doctor is recommending right now. Once you establish what you can or can not tolerate than you can start working with some homeopathic remedies. I use a mix of both to control my symptoms. You could try Malic Acid which comes in capsules to ease muscle cramping and twitching. Curamin which is a spice is very effective for pain. For this application, it is highly purified and in capsules. Melatonin and/or Calms Forte for sleep issues. As I mentioned, it takes time to figure out what works and you need to allow your body to adjust (if at all possible) to the prescribed medication.

Have you been tested for a Vitamin D deficiency? This is done with blood work. Another option is gluten sensitivity. It is possible to be gluten sensitive (me) without having full blown Celiac disease. The best and most accurate results are obtained using a stool sample. Either of these issues will also cause widespread pain and are common among people with FMS.

The doctor best suited to treat FMS is a rheumotologist. You can find a fibro-friendly rheumy a couple of different ways. Call your local hospital and ask for the physician referral service. See if they can match you up with a rheumy and/or a pain specialist (I have both) with an interest in FMS. Or, you can go oline to the National Fibromyalgia Association website and see a list of doctors for your state.

With regards to to diet, if you use an artifical sweetner (including Splenda) get rid of it. If you need a sweetner, use something made with the nontoxic Stevia plant like Sun Crystals or Truvia. You can find the latter in the grocery store alongside the other sweetners. Try to avoid eating deep fried food, lunchmeat or red wine (nitrates) as these items will also ratchet up your pain level.

You could purchase "Fibromyalgia for Dummies" through Amazon. Like the rest of the dummies series, it contains good basic information. Read yourself and pass it around among family and friends.

I'd also like to gently suggest that you consider finding a therapist who deals with chronic illness. Many of us see someone and find the extra support very helpful. You can call your local hospital and ask for the physician referral service. They should be able to recommend someone. The other option is to use Google and see who pops up in your metro area.

The key to living with FMS is learning to be grateful for what you can accomplish rather than what you are no longer able to manage. You must learn to pace yourself and respect what your body is telling you. Learn to say "no" and not feel guilty about it. Break tasks down into more managable increments and/or not be too proud to ask for help. FMS is variable on a daily basis. This makes it very difficult to plan. Knowledge is power. Read through the blue boxes on the lefthand side of this page and look at some of the old posts to see how people manage this syndrome. You are not alone. I hope that my comments are helpful to you. Take care and God Bless.

 

greenie - December 16

I also was just diagnosed and prescribed Lyrica. Wow, what a head spinner! I couldn't get out of bed for two days, spoke to doc. lowered the dose and still could not function. Going back to doc. tomorrow. anyone have luck with just pain killers, or Gualifensin? Does anyone take Amitriptyline to help sleep? I had partial hysterectomy 4 yrs. ago, but my ovaries and fallop. tubes out this year, feel like this was the turning point of Fibro. coming on. Wanyone else have similar stories or suggestions? thanks

 

greenie - December 16

Fantod, thank you so much for all this beginner info! I have been tested for Vit. D and am taking 2000 mg. a day, and blood work is now fine. No problem with gluten either. As I said finally got the Lyrica out of my system, but going back to doc. tomorrow to find a better solution, or combo. I am finding it very hard to sleep as all the joints I sleep on are inflamed! Do you all sleep on a special bed? Also, are nay of you on disability? Can yu tell me how you went about that? thanks

 

Fantod - December 17

Greenie - There is no inflammation associated with Fibromyalgia (FMS). Your joints may ache but if there is any indication of redness or swelling than something else (like RA) is going on too.

At the moment, I am sleeping on a waterbed. I find it very difficult to manuver around but I do like the warmth. Prior to this, I had a conventional mattress with a magnetic mattress pad on it. Magnets are pretty amazing for pain and I found that pretty helpful. If I had my druthers, I'd probably have a Temperpedic mattress. I slept on one in a hotel this summer. I was not hot and woke up feeling pretty comfortable. An option is to get a Temperpedic mattress topper which would be less expensive than the whole bed.

I have been disabled since 2007. You can not get Social Security Disability for FMS by itself. You must have underlying conditions such as degenerative disc disease, depression, panic attacks, IBS etc along with FMS. All of this must be well documented. I used a company called Allsup. You can find them online. They have a 98% success rate and usually have you approved in 6 months or less. This is a record compared to using a lawyer. Some people wait years using an attorney. Allsup does all of the paperwork for you. They take 25% of your back pay if they win (standard fee whether you use them or someone else) and nothing if they don't. And, they will help you appeal your case. They are really nice to work with. I have no ties to them other than as a satisfied customer.

Gualifensin is a waste of money. There are NO miracle cures for FMS. The National Fibromyalgia Association did a study on it and it was found to be useless.

I was on Amitriptyline for a couple of years and it did help with sleep. I now use Calms Forte and Melatonin for sleep just to cut down on the number of prescriptions I take. No matter what you take, quality sleep and FMS do not go hand in hand. You really do need to take a sleep med of some sort no matter what or your pain level will probably continue to climb.

My FMS started when L5 failed in my lower back. The neighbors are packing too... I already had a pretty advanced case of osteoarthitis, TMJ, and an unbearable stress level. Nothing like the perfect storm scenario...

I think I have answered all of your questions. Good luck with the doctor tomorrow. Take care.

 

greenie - December 18

thank you for the feed back. Doctor was very helpful and hopefully we are on some kind of path. Thinking the topper would help, I need to sleep. The PT thoughtold me to push myself and get out everyday, this is contrary to what I read. It says to save your energy for things you know are coming up. Do you work at all even parttime? I am going to look into disability and in my state it seems you can work some and still collect. I don't want to just stay home. Any other opinions out there?

 

Fantod - December 18

greenie - No, I am not able to work at all. On SSD, you can collect up to $10K a year working part time. I wish I could but I would be the world's most unreliable employee.... Chronically late, asleep at my desk, absent, in the bathroom...you get the idea.

I agree with PT to a point. FMS is variable and it may not be possible for you to get out and do something every day. Being totally inactive is not the answer either. You become deconditioned and then even the most simple task becomes impossible. Since you are still in the early stages of figuring out medication and getting quality sleep, I would not worry about it too much. Once you have a medication regimen that is working, figure out some sort of regular plan to exercise. Tai Chi is recommended for FMS. It has meditative qualities which are excellent stress busters and is slow moving. You could purchase a beginner DVD and do it at home. Another option is a water aerobics class for arthitics.

If you go nuts like some newbies do and take up marathons, you'll end up in bed for weeks. And, if you have an activity coming up that is something extra, we all pretty much eliminate something else to get some extra rest. As the old saying goes, walk a mile in someone else's shoes before you dictate the best course of action...

And, as for figuring out what to do about work, you have to be your own best judge. I would allow some time to see if you can get your situation regulated. If you still don't think working is realistic, than begin the application process. It will take about six months with Allsup. Your health history must be well documented and a favorable decision will be based upon health issues/severity other than FMS itself. Have a relaxing weekend.

 

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