Fibromyalgia.
Yep, I've long suspected it, but unti l saw my new specialist on Wednesday, it wasn't diagnosed. [Read: hundreds of doctors refuse to say if it's stress, ME/CFS or Fibromyalgia.] He's given me a script for Lyrica, so we're out of pocket for over $100 at least. If it doesn't work in a week, I can move on to stronger painkillers. Think Vicodin, OxyContin, etc. My new specialist, for once in my life, thinks that there is no way I can become an addict if I use it to treat pain! Besides, I don't have an addictive personality, and if I didn't require all these meds to survive, I would stop all of them. I'd rather be med free!
What this means for me:
Well, finally, a definitive diagnosis that sounds like a real illness. People say: "OH, so you're just tired and get to sleep all the time." when you say "CFS". When you say "Fibromyalgia", they say: "What is that? It sounds terrible!" Also, it means, for the first time in about 9-10 years, my pain will be treated. This gives me so much hope for my return to school; I sleep more when I'm pain-free, and I can stay at school longer when I'm pain free. I can also study for hours each night when I'm pain-free. If whatever painkiller this specialist gives me works, I will be so happy!
I've also been referred to another sleep specalist, although my new specialist reassures me that this person is an expert in the field. Hope so! I don't want to hear the words "sleep hygeine" again! I'm also being referred to someone about my dizziness, blacking out, etc. The aortal valve leakage isn't causing it to this extent, so I need a tilt table test. It really doesn't sound pleasant, but I do want answers!
Does anyone have any advice for how to deal with Fibro, what meds to try/request, and just general info, I don't know a lot about it! Thanks!! xoxo
LOL, I know what you mean about hearing more about sleep hygiene!
ReplyDeleteI'd like to think my site is helpful for people wanting to understand/learn about fibromyalgia - www.feliciafibro.com My all time favorite site for all things fibro though is The National Fibromyalgia Association site: http://www.fmaware.org/site/PageServer
I agree with your doc that strong pain killers can be used PRN (as needed) without becoming addicted. I know I've managed to do it just fine.
To me the biggest things that make a difference in quality of life are life style changes that allow you to do the most you can without having flare ups. It took me years to figure out key things that work for me, but there weren't a lot of resources when I was diagnosed. Now there are many more, so hopefully you'll figure yours out much quicker! Also, remember to stay positive! You know where to find me if you ever have any questions =)
Do you have ME/CFS, too? If so, you'll know what I mean about pacing. By the time I discovered the technique, I was too ill to try it. I can't rest until I have a little energy, and not overdo it. I've been running on a defecit since I was 13!
ReplyDeleteI've known for a long time what makes certain types of pain worse.
Sitting and studying will cause headaches, blurred vision, nausea, dizziness and agonising back pain. It travels right up through my spine and sometimes shoots down my arms so I can't move them!
Then, if it's going to rain, or it is, or it's just cold, I get arthritic type pain in every joint and bone of my body. My skin hurts sometimes, it's really weird!
The back pain gets so bad I am incapacitated. It's kept me from going to school on countless occasions, or caused me to leave early. The only thing that's worked so far is sleep, which I don't get, or lying immobile for 2+ hours on my bed. Not fun!
I've been stuck in a big "trough" with my M.E. since the start of 2009, because of the stress of Year 12. And the pain gets worse if I sit/stand/am not in bed for at least 12 hours of the day!
It's so restrictive. I hate living like this!
I'll probably have some questions once I go through a few different sites. I am not sure the Lyrica will work - Gabapentin didn't, and it made me nauseous, disoriented, dizzy, caused terrible blurred vision and headaches, not to mention it made some pains worse!! (Those are all listed side effects, lol.)
Thanks so much for commenting! Did you read the one about my reunion? Is there anything you'd like to know? =)
Alex xoxo
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ReplyDeleteI don't discuss specifics or locations on my blog, sorry. There are many who claim to be specialists, but in reality, there aren't any. Too little is known about ME/CFS for there to be a "specialist"!
ReplyDeleteIf I know you IRL, Facebook or email me. =)
ok emailed you!
ReplyDeleteOh, it's you! Okay, I've replied. Thanks for the music suggestions, too! =D
ReplyDeleteno probs, let me know what you think of the music when you get a chance to listen!
ReplyDeleteThat'll have to be when I'm well enough to use the iMac; no iTunes on my laptop. (School locked a lot of privileges last time it was reimaged/serviced.) I'll let you know. =)
ReplyDeleteIn future, if you put your name, rather than "anon", I'll know who you are, and not be like: "eep"
Hope you're okay. ^.^
can you let us know how the lyrica goes for you? i have the prescription bottle sitting on the counter waiting for me to give it a try, but i am leary. i had a terrible reaction last week to tramadol, which was very disappointing.
ReplyDelete-lucy
Well, it's been about 4 days.
ReplyDeleteSide effects so far: dizziness, weakness, disorientation, feeling really unsteady (so I walk into walls, etc.) nausea, weird appetite changes, slight weight gain.
It hasn't helped my pain at all! Though it seems to work for everyone else with Fibro that I know. (Via Twitter, etc.)
I tend to react badly to most meds. My family always gets the super rare side effects, so I really weigh up the risks, pros and cons before I even fill the prescription!
Hope this helps. =)
interesting - those are exactly the side effects i am afraid of. i was told it would take at least a week to determine if i was going to work for me. i wonder if your side effects will subside as you get used to it? i also am super sensitive (ie my tramadol nightmare) so he gave me a pretty low dose to start with with plans to titrate up if it works. perhaps your dr. started you too high? just a thought. good luck! i am still not ready to start...
ReplyDeleteI've been told it takes 3-7 days to work. This is the lowest dose, but I got worse side effects on Gabapentin. Compared to that, Lyrica is great. (Except for the part where it doesn't work!) I won't be upping the dose; given my Gabapentin trial on a super high dose to no effect, we're moving on to painkillers.
ReplyDeleteGive it a go, it might work! If it doesn't, or you get side effects you can't tolerate, stop it. Good luck! =)
I don't have CFS, but I get lots of debilitating fatigue with my fibro.
ReplyDeleteI saw you mention that most of the people you know who've used Lyrica had it work for them. Don't be discouraged, I know a lot of people it hasn't worked for and even doctors who aren't loving how it is working overall.
What types of pain killers did your doctor give you? If you don't mind sharing. I hope you'll find a way to utilize them, as needed, and start feeling better!
I'm on MS Contin, but it isn't working well. My doctor already had to increase from the lowest dose, and I'll probably have to increase again. (I'm taking 10mg twice a day, as per instructions.)
ReplyDeleteI really hope that it works well, once I find the right dose, because then everything will be so much easier! My pain is really bad because it's freezing and it's been raining lately. =|
Thanks, I'm just annoyed that so many medications don't work at all for me, and give me side effects. I've had to space out my doses, because of side effects. Do you have any tips for coping with pain? No one's taken my pain seriously until now, apart from my mum!
I also hope you this works for you, but just remember there are lot of other pain killers to try if this one doesn't! Eww - freezing weather and rain is an icky combo!
ReplyDeleteFor coping with pain I feel like I do a million things. For me, ~1/3 of it is a mental game. I've written a few entries about that on my website and if you click "My Philosophy" in the tag cloud it will bring those up.
For the rest of how I deal with the pain I use various medicines, as needed, massage, stretching, heating pads, ice packs, wrist/knee/ankle braces, etc... If my back pain is really bad and I'm waiting for a pain killer to kick in I've even sat in a tub, back hunched over my knees, letting water hit my back. The sensation of the water slightly distracts from the pain (as well as adding moist heat), making it slightly more bearable. Of course, a lot of how I deal with pain is doing what I can to not end up in as much pain. Let me know if you have any ?s about what I said.