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Posted 5/17/2010 10:19 AM (GMT -5)

Hi Everyone,

I don't post on here often, but come here to read a lot - especially on really bad pain days.  It really helps me to know I'm not the only one!

My neurologist DXd me with CRPS.  I'm not sure, but I think that's what they say when they just don't have any idea what's wrong with you.  I am so frustrated because it seems I've been through every drug they can think of, and nothing works very well.  I'm currently taking 450 mg/day of Lyrica for nerve pain.  I've been on Cymbalta, Savella, and Neuronitin.  I've had trigger point injections, rhizotomy, and Botox injections.  I take Skelaxin, Robaxin and Zanaflex for muscle spasms.  Most of these things worked a little bit for a little while.  But now it seems nothing is helping.  Does anyone have any more ideas for nerve pain and severe muscle spasms?  I was doing yoga and it helped.  But, I started taking Zocor for high cholesterol and I think it made my muscles super weak.  I've since stopped taking it, but I still feel so weak that even if I could push through the pain I barely have the strength to do a down dog.  And now I think the Lyrica is making me gain weight and really stupid...can't remember anything.  I've tried cutting back the dose, but the burning pain becomes intolerable.  At least it's working enough to keep me from crying all day.  I just wish I could find something that actually brought my pain down to a level where I can stop trying so hard to "act" normal.

Can other people relate to that?  The side of my body and/or face feels like it's on fire but I try to make a normal face so people don't think I'm crazy.  I try not to complain because I"m sure people close to me get tired of hearing it.  So - when I say I'm having a "bad" day to explain why I'm walking funny and slow...other people have no idea how bad it really is.  I wish other people could feel what I feel just for a little while so they understand.  When other people complain about aches and pains, it really pisses me off.  Am I the only one here that feels that way? 

Sorry...didn't want this to be just a rant, but it seems to have ended up that way.  I'm just having a bad pain day and trying not to break down at work! 

Posted 5/17/2010 11:08 AM (GMT -5)
I'm in the same boat. I'm diagnosed with "Atypical Face Pain" and "Atypical Trigeminal Neuralgia" It's awfully disconcerting when the doctors can pin-point an exact diagnosis.
You are not alone in your frustration with this!
Posted 5/17/2010 11:38 PM (GMT -5)
AFLady
You are not ranting and it is OK to have a bad day, or week, or month, or how ever long you have it feeling bad, and to come here ever one of those days and share with us the difficulty and frustration you are having! Just maybe we can help you and share your burden and lighten the load for you! Have they ever tried Bacolfen for your muscle spasms? I have tried them all I think, and Baclofen works the best for me, it is not perfect as I still have bouts of spasms that the baclofen does not seem to touch, but it still works better for preventing the spasms better than anything else I have I have ever used! It might be something to look into.



I do wish you well and you know AFLady you do have people that do understand what it is like to have "bad days" and to live with constant pain and they are right here! So don't just be a looking on in the back ground! Share those "bad days" with us! After all, we are all here to help each other, and that also includes YOU!



Good Luck to You



White Beard
Posted 5/18/2010 12:37 AM (GMT -5)
Hi AFLady...

I don't have any wonderful words of wisdom but I do want to wish you well and do hope you can find some relief. Have you considered going to a teaching/university hospital? They are great on the hard to diagnose patients. There's information on locating one hear you in the CP 101 thread.

Warmest hugs,
Chutz
Posted 5/18/2010 12:54 AM (GMT -5)
AFLady White Beard is right, you are not ranting, you just feel bad and need relief. Another name for your condition is called Reflex Sympathetic Dystrophy, this is the old name, they have since changed it to the fancier name. It truly is a medical condition all on its own and has been around for quite a few year. I remember back in the 80's when drs were first dxing people with it. It was awful, no one believed it to be real, most drs did not believe it, except PM drs, ins companies did not believe it to be a condition so they wouldn't pay for treatment. We do have some other people on here with RSD, I hope they see your post. Are there any teaching hospitals aroud close to your area? This may be some place to go for another opinion. I know one more dr, but it could be the one you need in your corner.

Please keep us posted on how you are coming along.
Posted 5/18/2010 5:31 PM (GMT -5)
just a thought, but stop going to doctors who keep giving you drug after drug...they obviously dont possibly know what to do to help you, are making money off of each med they give you. If they knew the answer than im sure they would of fixed it. Also, you are not ranting, i would be frustrated in knowing nothing had helped me either.
Posted 5/18/2010 5:54 PM (GMT -5)

Trust me, I feel your pain.  I know exactly what you are going through.  I've had chronic pain for almost 4 years now and they still have not been able to diagnose me.  I waited almost a year to see a pelvic pain specialist because that's what they thought I had.  Then, I went through treatment for that for over two years now and my doctor just told me last week that they weren't sure what I had!!!!  I couldn't believe it.  I too have tried botox injections.  I've been on gabapentin and am now on Lyrica.  I've also been on several muscle relaxers.  The pain can really be unbearable at times!!!!  I totally understand what you are going through.  Try to hang in there and do some deep breathing/meditation if you can.  That seems to help me somewhat. 

Write us back when you can to let us know how you are doing!

Stephanie

Posted 5/18/2010 9:12 PM (GMT -5)
Hi and welcome, Lots of us here have pain which won't fall into easy labels, we put up with the indifference of some doctors and share our frustrations. My heart is with you.

I have some sort of arthritis that won't respond to normal RA meds and seems to be on a steady decline. Swollen painful joints plagued my days. So I can fully relate to having nerve pain unanswered by meds. Can't offer much in the way of advice. Anti depressants and anti convulsants seem to dull nerves but I find they dull me too. Too big a price to pay at times. I've also tried pain patches, durogesic 50mcg but they seem to fuel my migraines so now I'm on slow release tramadol and trying accupuncture for symptom relief.

No help to you I'm sure but keep us posted with whats going on for you, golitho

Posted 5/18/2010 10:12 PM (GMT -5)
Thanks for all the encouragement! I've had chronic pain for 21 yrs now, strarting with a tailbone fx in childbirth, 3 compression fractures in my spine in 1999, and then neck injury by a chiropractor in 05, resulting in cervical fusion in 08. Whatever is wrong with me is definitely nerve related and "atypical". I didn't start seeing anyone for pain until 06 when I retired from the military. Hard to get help and maintain your career at the same time.
I like the neurologist I'm seeing now. If I do have CRPS like he says, it too is "atypical". All my injuries have been to my spine and CRPS in the spine is very unusual so who knows. I guess if it is, it comes down to just doing what you can do to minimize pain.
For those of you with nerve pain, do you build up a tolerance to the drugs like lyrica and gabapentin? If so, does it make sense to rotate?
Has anyone tried taking a "bolus" dose (like taking a bunch just once a day)? I read online somewhere that it may work better but am afraid to try since it makes me tired during the day, and I take so many pills at night not sure I'd wake up. I'm taking 450mg of lyrica...
Also, has anyone had success with accupuncture?
For those with trigemminal neuralgia, do you or have you heard of the pain originating from the base of the skull? My facial pain is what confuses the docs most because it feels like it starts with ice pick stabbed in the base of my skull.
Posted 5/19/2010 12:39 AM (GMT -5)
AFLady

Have they checked your disk around C-2 or C-3? I have severe pain at the base of my skull and back of my head and neck I often get Hot searing stabbing pain that goes from the center of my spine at the base of my skull and up through my head to the top back of my head and downward though to my adams apple! and I have severe aching pain all across the lower back of my head. MRI shows severe nerve root irritation at C-3, I have had epidural steriod injections, but they only last a few weeks, the 24th I am scheduled for an Occipital Nerve Block and to see the surgeon the 9th of june. For a possible ACDF. I have had good results from my ACDF at C-5/6 that I got last fall and my pain doc thinks that the ACDF at C-3 might also be beneficial!

I have had accupuncture with electrical stimulus one time and it tied me into knots with muscle spasms everywhere, and it took the chiropractor over 2 hours to get me where I was able to straighten out and walk out of his office, and I never went back!I have taken neurotin and it messed up my vision and didn't do anything so I quit taking that.

I do wish you well and hope that you find some type of relief. If you have been treated by the military doctors, I really do wish you luck. Unless things have changed, .......well........ I guess I will just say good luck to YOU!

White Beard
Posted 5/20/2010 11:01 AM (GMT -5)
You are not alone!!!

I do not have an answer about any of the pain/spasms, as I have them too. I just wanted to offer support to you today and a wish that today will be better than yesterday was.

Best to you!
Posted 5/21/2010 9:41 AM (GMT -5)
Dear AFLady,

With all the symptoms you listed, I disagree with your assumption that when a doctor doesn't know what the problem is he runs to CRPS as being the only thing left on the list. If there's any pain syndrome that doctor's run too by my opinion, it's probably Fibromyalgia. With the problems you're experiencing, everything you listed directly points toward CRPS. I have do doubt that the doctor is right in his diagnosis.

Regarding the spasms and how to cope, there are other medications and treatments that might help, and if you're like me it wasn't just one medications or the other, but not till we added them together when I saw a decline in the severe spasms you mentioned. We started me on Nortriptyline but had no luck. Then we switched me over to Neurontin, but once again saw zero results. That's when we started a cocktail of both, and to my amazement it actually worked! Another medication that's been really easing up some of the other symptoms I experience with my RSD is Diazepam which was a medication I was somewhat guarded against. Now when the hot knives start stabbing or I'm getting electrical charges, I just pop one of those and wow what a difference.

Lyrica has helped a lot of people, but for me I didn't notice any difference whatsoever which just proves we all react differently to different medications, so maybe there's still a few more worth checking out? The best of luck, Bob.
Posted 5/21/2010 1:30 PM (GMT -5)

Hello and Welcome.  I hear many people say that they have been a CP patient for years and still don't have a reason for their pain.....Mine is the opposite...I know what's causing mine and they can't do anything about it.  Just give me pills and send me on my merry way.  So, either way it sucks.

 

Me.

Posted 5/21/2010 11:45 PM (GMT -5)
Bob,
Thanks for the info! When I read the descriptions of RSD on the Internet, it just doesn't seem to match. It seems it's common in a limb, but not the back or neck so I don't have anything to compare my symptoms to. But your description of the hot knives and electrical shocks is exactly how I feel, and my muscle spasms are constant and really bad. I will look up the mess you recommended and ask my doc next time.
I hope your pain is under control and you have a good weekend!
Posted 5/22/2010 10:21 PM (GMT -5)
I have looked after children with this disease and boy do they ever suffer. Some of them I couldn't even touch them or the pain would be too excrutiating.
Wishing you didn't suffer so badly.
My thoughts and prayers are with you.
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