Urgent Lyrica Question!

[lethal-interjection]

I'm 18 and I was just diagnosed with FM and CFS on July 30th. My rheum started me on Lyrica Thursday night, and today I was reading about side effects.

First off, I'm seeing that most people expereince side effects before the drug starts working. That's horrifying, to be frank, but not as horrifying as the side effects themselves.

I found that A LOT of people experienced weight gain -- and I'm horribly phobic of gaining weight -- but then I saw something a thousand times worse; equal amounts of people experienced cognitive troubles, stuttering, "not being able to find the right word", speech disorders, and basically, overall being dumbed down. 88% of them reported those side effects did NOT go away when they stopped taking Lyrica.

Shocking, to say the least. To put this into perspective:

Since kindergarten I've had a very above average IQ -- 174, measured before kindergarten, and writing has consistently been my main coping strategy, all throughout life. That and speaking. Communicating. Not to brag, but to make my point firmer, people have complimented me lavishly on my intelligence, maturity, vocabulary, understanding of the world around me, political soundness, and firm viewpoints. People who didn't agree with my point of view were very explicitly accepting of it because of how I presented myself growing up.

That being said, the prospect of losing that is the last straw for me.

FM&CFS have taken everything away from me -- my girlfriend, my horse, my job, my way of living independently, my money, my friends, my entire social life, my high school graduation, my happiness, my pride (I now need a cane to walk around), my will to live. And now I'm seeing people all over experiencing cognitive and speech problems? Last week I was about to jump off the overpass onto the tracks by my house after receiving the diagnosis -- I'm sorry but if these side effects start happening to me there'll be nothing stopping me from doing it.

My question: does everyone experience this? Because from what I'm seeing, most people do.

I only just started Lyrica on Thursday and honestly if this is a great enough risk I will come off it, which is why this is so urgent. I read that coming off Lyrica is an even worse nightmare than these diseases themselves, so I want to catch this early. Even just writing this, I've made upward of 30 typos and now the thought of stuttering or losing words is making me too afraid of talking on the phone to even call my prescribing doctor.

Please help. I can't live stuttering and stammering and being unable to write. Honestly, going through every day in such horrible pain I throw up and cry and contemplate killing myself, as the past year has been, is still a better option than not being able to communicate.

 

[lethal-interjection]

I'm also gonna add some follow up questions:


What medications are better in terms of side effects?
Are there any special diets or anything I should be on? I mean, I have to eat only all natural foods since my body can't process anything artificial anymore, but are there any diets or super-foods that stave off side effects of medication, or even pain?

 

[Loftpat]

Before I answer med questions, I strongly encourage you to contact your crisis hotline if you continue to have suicidal ideations. I also encourage you to find a supportive counselor who deals with chronic pain and specializes in cognitive behavioral therapy. I've walked the down that dark path, and empathize with your feelings. Please seek help.

Okay, first the tough news: All meds for fibro have side effects. If you've read any portion of this forum about medications, you will quickly realize that some meds work for some and not for others. Some deal with many side effects; others not so many or none. So it is a bit of a crapshoot finding what works for you. And unfortunately you won't know how your body reacts until you test it out. I take Cymbalta, which has helped me with pain as well as depression and anxiety. But for some others, it was a nightmare. The good news is that now there are some meds for fibro. There is also some good evidence that some supplements help. Do some research using google scholar and talk with your doc. Beware snake oil and wonder drug cures.

Fibro fog does impact some fibromites. It still catches me on bad days, but I have trained myself to relax and not obsess. You may not have cognitive issues at all. Even if you do, it doesn't rob you of your intelligence. You'll likely have days when you just think more slowly. It can be frustrating because you can't do things as quickly or you feel like you're a walking version of "Damn you, autocorrect." Hang in there, you'll be fine. The more you stress the worse it gets.

Diets? Check the forum. Lots of folks try different diets...some with success. I avoid dairy and night shades, and I restrict my bread intake. I'm a vegetarian and avoid processed food.

Try meditation, if you haven't already, to help you relax. Stress is our enemy. Please take care and welcome to the forum!

 

[lethal-interjection]

My doctor doesn't even want to try Cymbalta with me because of my extensive suicide and addiction history.

I've had fibro fog since last year -- the slower thinking, the cloudy feeling, the grogginess -- but on drugs.com is lists as a common side effect of Lyrica "dementia". I can handle fibro fog, but at 18 I will not have dementia, or the speech disorder so many people describe getting and then never losing.

I do have a therapist I see weekly, or, saw, but I've been too sick the past few months to see him at all, and if I checked myself into a hospital they wouldn't accommodate my strict food limitations or 24/7 pain and vomiting. x.x



What have you guys found to be the best medication for FM so far? Off label stuff included.

 

[lethal-interjection]

Does it always take this long for replies on forums to show up? o.o

Edit: no, I guess my reply just got lost in translation. -.-



My doctor doesn't even want to try Cymbalta with me because of my extensive suicide and addiction history, so that's out of the question unfortunately.

I've been dealing with fibro fog for a year now -- the grogginess, the fuzzy vision, cloudy head, slower thinking -- but drugs.com lists under frequent symptoms "dementia". I will NOT be 18 with dementia.

I've also considered checking myself back into the hospital -- been there a thousand times before -- but they couldn't accommodate my strict diet needs. If there's one single artificial ingredient or GMO chemicals in something, it makes me violently sick for the next day at least; I've gotten careless at the grocery store and experienced the consequences numerous times. I can't even really eat at non-GMO, all natural restaurants anymore, because you just never know. So between that, the everyday throwing up from pain, and other things, i i dont know of anywhere near me that could take me. :/


What medications gave you guys taken and had the most success with? Medications, that dont cause dementia. Off label included.

Thank you!

 

[lethal-interjection]

*correction-- that's meant to say non-GMO, non-all natural
~

 

[Loftpat]

Western medicine: Well, there are the older tricyclics and Savella, another SNRI like Cymbalta. Not sure of your psych meds. Oh yeah, also in that vein is Wellbutrin. Then you get to the addiction issues with pain meds, including Tramadol though it's not as likely. Muscle relaxants like Flexeril.

Alternative: There are folks here using naturopaths. Have you considered that route? Also Cannabis high in CBDs, though that may also be an addiction issue.

Hmm. I'll leave it to others.

 

[Lana]

Try not to stress over it, you are going to make yourself worse. All the meds for Fibromyalgia have side effects, I have been on Lyrica for about a year and its helping with the pain. The pain is so bad that I have to take pain medication I don't have a choice. But it could be worse I could have M.S or Lupus are even Cancer. Fibromyalgia is bad but it isn't going to destroy our bodies. I have a good life, I just have some bad days and some good days. I do think you should talk to your Doctor about your concerns of Lyrica and other medications. Please don't do anything foolish, you will still have a good life.

 

[lethal-interjection]

Yes, I know the "the pain is so bad, I need to take medication, I dont have a choice" problem because I go through the exact same thing. I haven't left my house since last November, minus appointments and hospitalizations, because of the pain. ;3; It starts the second I wake up and gets worse as the day goes on and nine days out of ten I wind up crying on my bathroom floor and throwing up because is hurts so bad.

Not taking something is in no stretch of the imagination a possibility for me -- I'm just looking for alternatives.

Living in New York, I dont know how easy medicinal marijuana would be to get, but I'll look into it.
Pretty much any medication that won't destroy my brain ir ability to wrote and communicate, I'll give a fair chance to. I'm desperate for something to take but I can't risk irreparable dementia.



*Honestly at this point I'm wishing it was something that destroyed my body and wound up being terminal. I dont have a good life, i dont find enjoyment in anything anymore...ugh. The "it could be worse" card unfortunately doesn't work for me, I'm sorry. Im not by any means a person who engages in self-pity -- rather, i just wish it was worse. I know people do go on to have good lives but I just don't see that being in the cards for me. I didn't finish high school because of this disease and there's just no hope for college. My home life is shit but since moving back home I dont see a way to ever leave again if I'm stuck working minimum wage jobs -- if I'll ever be able to have a job again at all.

I dont know. No one's gonna believe me after reading that that I'm not the 'feeling sorry for myself type. That kind of behavior actually really pisses me off because i grew up around it; my aunt had a personality disorder and a myriad of other problems besides. But now I'm getting off topic.


I dont really trust those drug options that aren't real drugs -- honestly i need something with the strength only real medication can promise -- but other than that I'm pretty much willing to try anything. Well, anything that won't give me a speech or cognitive disorder.

I'll ask again -- in your personal experience, what's been the best drug for you guys?

 

[Lana]

Sorry I didn't mean to imply that you feel sorry for yourself, I was just telling you what works for me emotionally. Anyways have you tried Tramadol? Maybe you can ask your Doctor about that. I take Lyrica and Tramadol that helps me.

 

[lethal-interjection]

I'll definitely ask about Tramadol -- just waiting for a call back. Lyrica isn't really an option anymore though. Is it possible just tramadol (plus the vitamin D I take) could be enough? I mean I still need something for nausea and dizziness (I've taken pretty much everything they can offer me for both tho :/) but I mean for pain; could Tramadol be enough for severe pain?

 

[Lana]

I'm not sure but its worth asking your Doctor about it. Hope you get the Medication you need for pain. Don't worry I had to keep trying different meds until my Doctor and I found something that works for me. It might take a while to figure it out. Good Luck

 

[CindyT]

Hi, I was very nervous about starting lyrica after reading all the side effects. My body doesn't handle meds well, but I was desperate for some pain relief and decided to give it a try. I have been taking lyrica for about 3 months now. The first week taking it was the worst for me. I had the feeling; of being high, nauseous, and dizzy, my face got very red (rosacea), my arms showed some red bruising under the skin. Every day it got a little better, the side effects started to go away, and my pain started to ease some. I don't think my pain will ever go away, but lyrica has helped me. It hasn't affected my speech or my ability to think.

I think all meds effect people differently, and you just have to talk to your doctor about your concerns, and give the meds a try to see what helps you. Good Luck , Don't give up.

 

[fibrodude84]

I started Lyrica a month ago and have been gaining weight but otherwise it seems ok. I haven't felt any difference but my memory is sharper.

All drugs carry scary side effects but they are so rare and if they were that dangerous they would never be approved. It's worth trying to see if it helps fibro which is real rather than worry about something very unlikely.