I'm probably behind you, but I'll add my 2 cents, is all it's worth. I've taken Lyrica 2 weeks, isn't helping. Hope you have better luck! I've taken some other drugs, simple stuff, muscle relaxers, etc. I hope you post how the neurologist visit went. Good luck, try keep your chin up, sure isn't easy. Suz

Hi Suz,

Thanks so much for your response.

The neurologist I saw was very nice and listened (which sometimes can be rare so i deeply appreciated it). She says I'm getting migraines (even though I keep insisting they're just headaches) and so she has prescribed me tizanidine 4mg a day along with aleve/naproxen twice a day for a week to see if it will calm the remnants of what she claims is the aftermath of a migraine...

I talked to her about the cognitive stuff getting worse (after telling her about my fibro diagnosis) but she doesn't think it's the fibro or the lyrica - she thinks it's psychological issues (I am diagnosed with PTSD (CPTSD) and Disassociative Disorder from childhood traumas). She says that it is more likely being caused by increased anxiety. This is a little frustrating to me because I actually feel LESS anxious than I normally do. I had been previously diagnosed with depression as well but Lexapro has been a wonder drug for me and I have actually never felt as optimistic (despite my major health setback). During my initial visit I had revealed that my father had just died over Christmas (because you have to list parent/family history information) and so she seems hung up that that is causing me additional distress... which I know would be the case for most people... but, as I mentioned, my childhood was complicated and I actually feel huge relief since he passed (which I know seems horrible...) but he was the only reason I still had to interact with my mother and so now I'm finally free from my parents for the first time in 33 years and I feel such a weight lifted...

all that to say - it's super frustrating to be told it's anxiety when I don't feel anxious! but even if i did - it's not like i'm not treating psychiatric issues - I go to therapy once a week and I've tried every psych med in the pharmacy until finding peace with Lexapro... i don't know what more i can do??? ughhh :( :( :( and just telling me it's anxiety doesn't help... thats like all the years before the fibro diagnosis when i kept being told "it's chronic stress".

Anyway, the one thing I can offer to you since you mentioned that Lyrica isn't helping yet is she said she was familiar with Lyrica and really liked it as a med. She said it definitely takes minimum 4-6 weeks to feel the effects though so don't necessarily give up yet. That made me more hopeful it'll work out. She said it'll also help with my "migraines" aka headaches.

In conclusion, I'm going to see if the tizanidine helps any of the rest of my pain during this week and I'm going to give the Lyrica a couple more weeks to kick in and then I'm going to return to my rheumatologist and ask her about ongoing muscle relaxers, pain meds, etc. once I have a better sense. I'll let you know if the Tizanidine does make a difference because if it does (and I don't feel too groggy) - I might ask to stay on it for a couple more weeks until the Lyrica kicks in.

Ok - thanks again for listening to my ramblings. Just having such a hard time lately and venting on here helps a lot.

vanessa! This group is great!! Sure helps me! I will talk to my Rheumotoligist Tues. I expect a med to work PDQ, haha wishful thinking. Thank you. Besides FM dummy I am computer dummy, can't make paragraphs! Glad your burden is lifted! My father passed away 3 yrs ago. Is still hard for me, I don't talk about, I try not to think about it. I havn't told Doctors, I write down age he would be now! They ask when he passed away and why. IS none of their business! I am happy your burden is lifted. We are all different, I do not judge you for how you feel, you have good reason. I admire your honesty, I can't be honest about it with my docs! I salute you! Darn paragraphs, haha! I had migraines first month, they went away! Strange. Lyrica gives me a headache. I swear I am backward. I don't know how you get through every day, I salute you again. You must be a fighter? Makes my problems seem so minimal. It's like - why should I complain when you have so many issues. I am sorry for your pains but I admire you so much. We all do the best we can with what we have. But is nice to hear it's not in your head, that it is real! After at least 2 years my husband still says nothing wrong with me it's just the weather! How stupid! Please post how you are doing. Thanks so much for your response. So much info which I really need. Suz

I have limitations because of my epilepsy, so I get stuck with some lame ones. Muscle relaxants can help me, but mostly because when I get flared, it comes with muscle tension, not happy times. I have PRN baclofen. It has a very brief half-life so I'm not dragged out or anything.

I also have dx'd PTSD (cPTSD, and medical PTSD), and anxiety can totally scramble my brain worse than fibro. THat said,t he PTSD meds help with that, and so does sleep, and so do the usual recommended therapy things blah blah blah .... you've probably heard them all!

One thing I found useful when I could afford it was acupuncture and a very gentle massage every week. Wow did that help. Also, a newer therapy called PENS (it combined TENS and acupuncture, basically) was very useful for me in recovery from an injury. Not a lot of places have it, but if you get it? From a *medical doctor's office licensed nurse type only*. A chiropractor is *not* any good for this.

I got nothing else but support:-)

Leo, thanks for the post! You all have so much info. I am a FM dummy.
My father in law, Bless him, had epilepsy and lived with us alot so I have little knowledge. Is a bad thing!! I went through 3 chiropractors, no help.


My youngest daughter told me how to make paragraphs, LOL. I am also a computer dummy. Sorry still practicing on paragraphs.

Maybe 10 years ago I would practice writing my name so I could write a check at the store. Was that FM? My hands don't work well in the mornings. Is that FM? Trouble typing for computer or text. SO weird!


Leo, like you all I have is support. All of you understand. I don't feel as alone, but am sorry you are "here" with me. I have same problems with my husband. We really need support. Thank you all so much

suz

Leo thanks for chiming in and Suz you are so kind and supportive but we are all struggling with what we have so please don't feel like your struggles are any less!

Leo is the PENS like electronic acupuncture? If so, my physical therapist has tried that with me a couple of times... Don't think I've really noticed results :( I have a tens unit that I just dusted off and might add back into the repertoire again. My physical therapist was doing massage w me a couple times a week. He's great but didn't think I had fibro... He kept insisting that people w fibro all their skin feels like it's sunburnt all the time and that isn't how I feel. I stopped going bc while the massage helped in the moment... By the time I had my coat on to leave my back and neck were back to aching...

I haven't tried acupuncture and I think my new health insurance might actually cover it (I'll have to check). People certainly keep recommending it so it's worth a shot!

Thanks for all the help... Having this board to post to is such a relief. My husband is a really, really good guy... But he definitely hasn't come to terms w my diagnosis. He is convinced that if we just make a plan to manage my systems I will return to normal and be done w this.

Vanessa, get the hubby to read "Fibro for Dummies". Mine had to be lectured by my rheumy back in the day (20 years ago now, yikes) before he'd "really" let it be true. *eyeroll*...

And yes, PENS is like TENS with inserted needles. It took me about six sessions to notice much, but I was in pretty bad shape.

Also, massage that causes pain? By a fibro-denier? Kick him in the groin, and ask him if he's "sure" his pain is classic "testicle contusions", since you heard everyone with that sings soprano, and he doesn't;-) *evilgrin* Sorry, I've actually been pretty PO'd at a few people in the medical field in my day, enough so to snap at them with lines like "If I kick your balls, is that in your head?" (Ahem.) So definitely look into *gentler* massage.

I had a lot of fun with Swedish and hot stone massage. That last one is pricey, but when I could do it? OMG. *puddle* of relaxation.

Acupuncture is best done by someone trained in *China*, btw. Not even someone Chinese, but trained at a good school. So research the practitioner. For example, there's an "alternative medicine" therapy place here.... but its employees? Visit a different place for their own aches and pains. Red flag.

Good luck, and keep us posted:-)

Thanks - that's great advice!

I'm going to look into the acupuncture.

I did hot stone massage once as a splurge and ooommmggg it was amazing... My problem was I had to get up 3 times to go to the bathroom during the 60 minute session (grrrr bladder problems).

Have you found steam rooms or saunas to be of any help? I joined my local Y bc it has a pool and I go to yoga there and I haven't been making use of the pool or steam room lately bc I have gained weight and not wanted to crowbar myself into my bathing suit... But maybe I should again.

I was in the original drug test market for Lyrica It was called Pregamblin then, I must tell you, after one year, I was 40 lbs heavier.

I have tried all the meds you mentioned. I agree that Flexril did nothing for me. Ditto for tramadol. Hydrocodeine (sure this is misspelled), but am writing from a location where the pill bottle isn't handy. Can make one bottle of this last nearly 6 months. Be careful of OTC pain relievers, they can do damage.

As for sleep, never take Ambien. It nearly destroyed my life. That stuff should be pulled from the market. I am still working on finding something for sleep.

Ritalin does help for the brain fog.

Most important advice I can give is get a great doctor. I have one. Don't worry about hoarding pain relievers, just don't let doctors know, they think this means you are a druggie. But until you have had fibro, you don't know pain. It is mind boggling. Makes you understand how people can slip into addiction. I use heat, Tens Units, Meditation, Yoga, and a world of vitamins to keep me away from pills as much as possible.

Thanks for your thoughts, Frustrated.

Interestingly enough, I haven't yet gained any weight on Lyrica (though I've only been on it about a month now) - I've actually been able to lose a couple of pounds. I had gained weight on the gabapentin - but in fairness, it may have been to lifestyle situations outside of meds altogether. I stopped work at the end of September and so wasn't being as active. I've been back at work part-time for a month now and I also completely stopped drinking (which I think was 80% of my caloric intake).

Wouldn't hoarding drugs show that you aren't a druggie? Bc you are just holding them but not taking them? Alcohol has always been my vice as opposed to drugs. I don't even like taking drugs when I'm supposed to lol! I stopped drinking though because I didn't want to mix it with the Lyrica. I've stopped coffee too because of the caffeine... lol I guess these are good things? thanks Fibro??

I agree with you about the ambien. I was on it as a teenager and it was horrible- gave me such nightmares. I had been taking clonazepam at night but stopped that when i started the gabapentin and didn't start back up. Maybe I'll talk to my rheumy about it when I see her. It's been a solid month now without ONE night of continuous sleep... constant waking (which is a new thing for me in the last couple of months - and especially to have it happen every single night).

I hear what you're saying about doctors. I have a phenomenal primary care, neurologist and psychiatrist. My physiatrist is a good guy and good doctor but he has no idea how to help me... I have a new rheumatologist who is very familiar with Fibro (only seen her once and I was very upset so didn't know what questions to ask, etc.) but I'm seeing her again in a couple of weeks and so will be more prepared and see if she's a good match for me. So all in all, can't complain about the doctor team at the moment... just still can't accept that this is it and I'm going to feel in this much pain for the rest of my life!

Starting to feel the feminism in me bubble up because so many people are impacted by this illness and yet so little research on it... makes you wonder if it impacted men and women equally if there would be more funding for it.

Anyway - that's my rant for today!