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misdiagnosed for a decade

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Posted 10/21/2013 5:06 PM (GMT 0)

Ok, I could rant about having been misdiagnosed for a decade (told I had RA, when it was Fibro and carpal tunnel) but I want to be positive. The good: I found this site, I finally found a wonderful doctor and I have the best family in the world.

Here are a couple questions for you all.

As you try different meds to see what will or wont work, how do you deal with the pain? I'm on a pretty low dose of Effexor (75mg)and Gabapentin (100) because... well because I just was properly diagnosed. However, until or if these drugs start working, what the holy crud do you do about the pain your in? I've used heating pads and hot showers but that doesn't do much except offer about an 1/2 hour of relief.

Thank you!

Posted 10/21/2013 5:14 PM (GMT 0)
Effexor is for depression--it isn't going to do much to help deal with the pain/fatigue from FMS. It ought to help lift some of the bleakness of depression.

The gaba is for pain relief.

It takes up to six weeks for full effects of medication to become apparent, and for any potentially frustrating side effects to lessen.

In the meantime, some OTCs can be helpful, such as tylenol (acetaminophen) or naproxen or advil (ibuprofen). If you have IBS, you might have some issues with these.

Gentle exercise daily can help with much of the pain. When I move daily, it helps me more longterm. Hope that helps.
Posted 10/21/2013 5:36 PM (GMT 0)
I take tramadol, gabapentin, use muscle rubs, and listen to relaxation videos.

Some days are just tougher than others. I've found out the more I stress over the pain the worse I feel.
Posted 10/21/2013 7:10 PM (GMT 0)
I take hot showers, also Epsom Salt baths, heating pads, ibuprofen helps me more, but that sucks because it can be hard on the stomach. I also try to exercise and I a, looking more into scent therapy. I have started to use Lavender for it's calming effects. I do omega supplements, I also take grape seed and I am trying out turmeric, I have heard positive things about taking it.
I am glad you finally found a good doctor. So many just don't get it.
Posted 10/21/2013 7:52 PM (GMT 0)
Hi, Shanzmac, and welcome!  I've heard this story before.  Fibro is hard to diagnose since there aren't any real tests for it.  You have to have a lot of testing done to rule out other illneses that have many of the same symptoms as fibro.  But, the good news is now you know what you are dealing with.

 

Effexor IS used for fibromyalgia.  It's an SNRI just like Cymbalta.  Cymbalta is generally the drug of choice and is the only one approved by the FDA for fibromyalgia but doctors do use Effexor too.  Other drugs used for fibro are Lyrica and Savella.

 

I didn't want to take any of the above so I use ibuprofen with food, Tylenol, magnesium malate, vitamin D3, and a prescription muscle relaxer called Robaxin.  I add to that daily walking and/or swimming, daily stretching exercises, and I pace myself.  I do get gentle massages from a neuromuscular massage therapist that have helped me also.  All of the above have helped me be in control of the pain and fatigue that comes with fibro and I have lived a full and enjoyable life in spite of this illness.

 

The magnesium and vitamin D have made a difference with quite a few members so that might be something to check out.  Be sure to read Fibro 101...the first thread on the forum.  There are links to good info about fibro and you will learn a lot there.  There are links about the magnesium and vitamin D3 and how they work in  your body.  Other good starting links for you would be Symptoms and A Thorough Explanation of Fibromyalgia.  You just might see yourself there.

 

I'm so glad you joined us and am looking forward to getting to know you better.  Don't hesitate to ask questions because we are here to help you.  Hope to hear more from you soon.

 

Sherrine

Posted 10/21/2013 9:03 PM (GMT 0)
Hello, Shanzmac. Glad you're here, though of course not glad you had to do the search to begin with...

I was also given Effexor to try for pain a few years ago, and ended up quitting it after a few weeks...it made me feel strangely "amped-up," and since I'm prone to Tachycardia anyway, I really didn't like that. It may have helped some with the pain (I can't remember.)

I'm on Gabapentin now (1200 a day) for extensive lower lumbar nerve damage, and it does help me. I tried to cut back a couple of weeks ago, and - wow! - won't try that again for awhile. It does make me EVEN MORE spacey than normal, (but what can you do?? You have to function!)

Anyway, since your pain isn't under control yet, you just have to try different things. Chiropractic adjustments helped me, years ago, but I think I kept them up too long, and maybe even did myself some damage that way.

Some people benefit by accupunture. I didn't.

I believe all of us do better if we don't stay in one position too long - that can leave us in a bad way! GENTLE exercise, especially in the beginning, is what we need. Walking, water movement, things like that - and you probably need to start out more slowly than you'd think. It's easy to overdo without realizing it ;(

I'm glad you have a good doctor and supportive family - those are 2 of the most important things! Hope to see you around more, so we can get to know you. Good luck.

Debbie
Posted 10/22/2013 7:39 AM (GMT 0)
Welcome! Yes the pain and the fatigue are the main issues for most of us. We all have different ways to calm the pain. Are you under lots of stress? Most of the time it will really keep your pain flaring if under lots of stress. I found out a light exercise program has reduce my pain. The magnesium and vitamin D does wonders to. I can live under a heating blanket. It relaxes my muscles. Lol

I tell others making some life style changes really does help managing your fibro. Making good sleep habits, eating well, reducing work hrs., exercise program and reducing your stress as helped me.

I hope your meds work for you. Trying some distraction like music and meditating has helped my pain in the past.
Posted 10/22/2013 11:11 AM (GMT 0)
Acheybody.....

I am also on gabapentin 1500 daily, it has helped, but you are right about the spacey aspect. My question to you is, do you still drive and things like that? Because I have on some days, then been like "how the heck did i get here?" and not remember ANY of the hour drive i took....kind of scary!
Posted 10/27/2013 3:16 AM (GMT 0)
Thank you all for the comments. I help run a mall so this time of year is just complete craziness, but I'll get through it. Sherrine, living in the Midwest my vitamin D drops a bit in the winter so historically I've upped that supplement during those months. Magnesium is new to me so I will check it out for sure. I also have my first medical massage appointment in 2 weeks. Very excited about this. Maybe I'm just feeling impatient. You know...I have 10 years to catch up on. ;)
Posted 10/27/2013 3:23 AM (GMT 0)
Achybody, I suck at moderation! I'm kind of an all or nothin' gal Having said that I'm really really trying to be mindful of my actions and to ask for help if I need it. Oy, this life is a wild ride.
Posted 10/31/2013 4:49 AM (GMT 0)
Shanzmac - yes, it is a wild ride! There's always something new to contend with....especially in the beginning. It will calm down some, you'll find the new normal. But of course, it will never become totally predictable. I know sometimes I can lift a certain object and it's ok, and other times, it will set off a chain reaction of pain and fatigue. Not Fair!

Mrsbugzy, yes, I do drive every day. I actually never felt that my driving was impaired, even when taking twice as much Hydrocodone as I do now, plus the Gabapentin. Weird, huh? I absolutely love driving, because it's one thing I can do that doesn't hurt. It relaxes me. (That would be scary to not remember your drive!) The kind of spaciness I have is mostly organizational - where I put things, where TO put things....like bills  idea   - and keeping my mind on one thing long enough to accomplish something.  I've always been this way, but now it's X 10!

Debbie
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