Hi Nico

Welcome to the forum.

I have started taking Lyrica and have noticed a dulling of the nerve pain in my hands and lower torso. Only potential downside is the possible side effects and if you have no coverage it is very expensive (I’ve heard Cdn.$300 for a bottle)

I have also found that being in a pool and the hottub takes away a lot of pain. Joining a pool is one of the best things I have done in recovery.

I hope this or other posts help. Keep rocking!

Hello welcome to your GBS/CIDP forum family. You are not alone. We are all here for you. You are in my heart & in my prayers. I am 8+ years into CIDP. I too had C-5 C-6 fusion, but that was 15 years ago. My neck hurts like the dickens! And of course, all over hurts too! In recent yrs. several discs in my neck & lumbar have detierorated too. I take lyrica. I don’t know just how you feel, but I care! I do hope you read every post & thread & story here & ask as many questions as you can. So sorry you have this affliction.

Love, smitty

[QUOTE]Hi, tried Lyrca way back and didn’t help but I know it’s help a lot of people with fibro. Thanks for the pool tip! I see your a musician…same here![/QUOTE]

whoa,whoa,whoa! I never claimed to be a musician!;) 😉 😉

I’ve always had to work at being entertaining to make up for the lack of talent 🙂

I do miss my moments of sweet dissonance! What do you play?

My left foot drop preceded my C5-C6-C7 fusion by almost 26 years.

The fusion symptoms and the other symptoms occurred concurrently. The fusion relieved the majority of it’s specific symptoms. Unfortunately, the weakness and, ultimately, the CIDP related symptoms progressed over the following 10 years.

My worst, thank goodness, nerve pain(s) were only in my right hand and were incorrectly diagnosed as carpal tunnel and then anterior interosseous syndrome.

Oh, well, I’ve tried every medicine mentioned here, and then some. Couldn’t begin to speculate what ‘fixed’ my nerve pain. I look back over the years and realized it quit hurting.

Good luck to you.

[QUOTE=Nico]I play guitar and cajun accordion, been doing this full time last four years. It’s my passion but I don’t know how longer I’ll be able to do it with this chronic pain.[/QUOTE]

Sweet! What kind of music do you play? Accordion eh? My wife has turned me on to Arcade Fire who use thm nicely.

I like to RAWK!

AND no matter what please believe that you will play again.

I know that you and I are different in our sickness, but if it helps I will tell you that eight weeks ago I could barely pick up my guitars (the Les Paul almost pulled me over!). When I playe the strings felt like hot knife blades.

Today i practised major and pentatonic scales for about 5 minutes (and played a wicked djembe along with The Police).

Have you received any treatment yet? I don’t know anything about how you got sick. If you feel up to it i would like to know more.

Best

[QUOTE=Nico]I hear you! So your nerve pain got better with time you think?[/QUOTE]

Nico,

I don’t have nerve pain, anymore. alright, allright, on a scale of 1 to 10 it’s above 0 yet less than 1.

[QUOTE=Nico]Since I’m new here, can you tell me what CIDP stands for?[/QUOTE]

“CIDP (chronic inflammatory demyelinating polyneuropathy) is a rare disorder of the peripheral nerves characterized by gradually increasing weakness of the legs and, to a lesser extent, the arms.”

That’s a direct quote from the web site, located here:

[COLOR=”SeaGreen”]http://www.gbs-cidp.org/aboutcidp.htm
[/COLOR]

copy the green part and then paste it into your browser’s address bar.

Nico,
The pains you are experiencing are a part of GBS/CIDP. They are no at all uncommon. A lot of neuros don’t understand this. CIDP which stands for “Chronic Inflammatory Demyelinating Polyneuropathy”. It is a varient of Guillain-Barre’ Syndrome. Hopefully you have went to the GBS/CIDP Foundation International main site and signed up as it is different from the forum page. They send you a great package that helps and if your nuero needs help he can read it too. Good luck and God Bless.

Pat G

[url]http://vimeo.com/11674104[/url] (CIDP)

[url]http://vimeo.com/11686193[/url] (GBS)

Hi Nico

above links lead to videos that are about CIDP and GBS, I hope this helps, we can talk if you like, check your messages.

best

CIDP stands for cronic inflamatory demylinating polyneuropathy. A whole lot of unexplained severe pain all over, loss of balance, loss of memory, inability to concentrate or focus. Insomnia, so tired I couldn’t get off the couch, difficulty swallowing, difficulty speaking. Extreme weakness all over. The only lab. test that was not normal was low Vitamin B-12. And that was about 8 months into it. I was seeing myself go from athlete to invalid in one heart beat and not being able to say “something bad is wrong here!”

Best of luck to you!

smitty

Have you had more MRIs of your neck? Could there be something still wrong there?

That tiny little insignificant kink could cause a lot of trouble. If your chiro cracks or pops your neck, they could paralize you. It has happened before.

What kind of homeopathies do you use?

Kink. My pain management Dr. did epidural steroid injections in my facet joints in my neck. It realy helped.

Love, smitty

Yes, me too. (what smitty said) Epidurals are not limited to ‘saddle blocks’ prior to going into labor/delivery.

However, I reckon that the series of prolotherapy shots I got long after the epidurals ultimately helped a lot more.

No doubt there are those, similar to me, who got results, or thought they did and then there are the naysayers.

this article from Mayo clinic sums it up well:

“Question Prolotherapy: An effective treatment for low back pain?

Is prolotherapy an effective treatment for chronic low back pain?

Answer
from David P. Martin, M.D., Ph.D.

Prolotherapy involves injecting sugar solutions into painful ligaments and tendons to stimulate production of connective tissue. The theory is that prolotherapy can strengthen these ligaments and tendons and reduce pain. Studies of prolotherapy have reported conflicting evidence regarding its effectiveness in treating chronic low back pain.

A review of five well-designed studies concluded that prolotherapy alone is ineffective in treating chronic low back pain. However, when combined with other treatments — such as spinal manipulation and exercise — prolotherapy may improve chronic low back pain. More research is needed to clarify what role, if any, prolotherapy plays in the treatment of chronic low back pain.”

so ya’ see. try it or not. No, insurance will probably not pay very much of it. On the other hand they might.

look it up or go here: [url]http://www.aaomed.org/#top[/url] Then click on Find a Doctor in the upper left corner. In the drop down box select which kind of therapy you want to find.

There’s another med. out for nerve pain, sevalla, have you heard about it? It has some side effects, but it has really helped some people.

I am on Savella…it helps where I couldn’t handle anything else or other meds just didn’t touch me. It does have its interesting side effects, but if you can get through them you will notice a difference. It is related to Cymbalta (and lyrica I think) but works just a bit differently. When someone isn’t getting results with one of the others, my doc said it might be worth trying the Savella. I got a cross over diagnosis of Fibro due to pain/pressure points and ins covered the medication. Since it is so new, it was hard to get them to understand nerve pain is nerve pain whether fibro or gbs. Anyhow, he did some more poking and testing and we came to the conclusion that it seems that I have fibro on top of the residuals of gbs. Not exactly what I wanted to hear, but I got the meds approved and have more good days than bad. JUST DONT SKIP A DOSE!! You will regret it dearly. Break through pain is also a concern and can be upsetting. I deal with that. May ask about increasing the dose of the Savella but am concerned about the blood pressure and heart rate increase (at first it was very obvious, but now only on occasion) and of course increased liver risk.

Point is, I have had relief when I did not get any with other medications.

Burning the nerves. Ablation, I have seen miracles. I know someone who gets to the point they can’t walk, go into the hospital in a wheelchair. After the proceedure, rise up & walk out!

Ablation! Yes I’m serios! I have seen miracles! I will do this myself if offered. Sorry I haven’t been on-line lately, it is so immense.

smitty

[QUOTE=northernguitarguy]Sweet! What kind of music do you play? Accordion eh? My wife has turned me on to Arcade Fire who use thm nicely.

I like to RAWK!

AND no matter what please believe that you will play again.

I know that you and I are different in our sickness, but if it helps I will tell you that eight weeks ago I could barely pick up my guitars (the Les Paul almost pulled me over!). When I playe the strings felt like hot knife blades.

Today i practised major and pentatonic scales for about 5 minutes (and played a wicked djembe along with The Police).

Have you received any treatment yet? I don’t know anything about how you got sick. If you feel up to it i would like to know more.

Best[/QUOTE]

Hey, fellow musicians~! I’ve had GBS since 1995, and I had just started playing bass in 1994. I actually had my bass with me during my 2 weeks in the rehab hospital, and got a lot of practice in between therapy classes.

Yes, I still have lots of nerve pain. It IS difficult for people to relate, because you cannot see it. It used to be very hard for me to be in a pool or take a shower—water used to exacerbate the nerve pain. Since starting Lyrica that improved dramatically….of course, Lyrica has it’s own complications. I also can’t play the bass for too long without pain.

Hi Nico,

Regarding Cymbalta… it turned into pure hell for me. Rage and anger poured from every part of my being. Don’t even remember if it helped my nerve pain. So if you can, ask a friend or family member to monitor your attitude if you decide to try it.

I’m on Cymbalta now and it is helping a little bit. However, there is one thing I would like to stress. You don’t want to stop Cymbalta cold turkey. Talk about fun and games…All I will say is that I learned my lesson and will never try that again. I have hear from others that with a planed phase out it is can be done without going through the nightmare I walked into. ‘Nuf said

Welcome to the forum, and sorry to have to welcome you to the pain center. Yes, unfortunately pain is previlent in association with both GBS/CIDP. I have tried two or three pain meds and it causes so much swelling that I’d rather suffer the pain with Tylinol.

I think you will find that finding the right med for never pain relief is sometimes a trial and error affair. What works for one don’t for another. Side effects differ from person to person. I know that for me Neurontin was OK, but not great.

Just out of curiosity, are you using something like “Sensedine” toothpaste? I know when I had some extensive dental work done my teeth were extremely painful right after the procedure. The toothpaste actually help desensitize the my teeth.

Hi Caryn
Welcome to my world! My face was one area affected by my first attack of CIDP a few years ago. I seem to be experiencing more pain as time goes on.
It has been playing up today (toothache type pain – on one side of the face – extending out to my ear). Thank goodness it is still sporadic – if it were continuous – yuk!
Also, like you my lower legs are aching and stiff today as well.
Sorry I can’t advise about what to take – I’m still working that out myself, but I do empathise with you and misery loves company! Lol

Best wishes
Kazza

Caryn,

Please, do not think I am a looney, someone else on the site posted about tooth pain just recently and I responded with this info. This is exactly what happened after my father in law had some dental work that faithful day six xrays, all was fine. He reccommended a neuro (hey, you already have one of those lol) The dentist felt it was trigeminal neuralgia, the most intense nerve pain there is. It is the trigeminal nerve located by the temple. The trigger can be from something as mundane as ice-cube chewing, brushing your teeth or dental work. He currently is on high doses of lyrica and has been on meds for the last few years since this started. We occassionally end up in the er, because the pain is so intense. He is admitted because he gets a morphine pump and is usually dehydrated by the time we get to the hosp. because he cannot open his mouth to drink. I am convinced barometric pressure has something to do with his flare ups in addition to stress. We always have a flare up in Spring and around New Years (xmas stress)

Now he recognizes the shocks as precursors to a flare up. So when that happens we know to start oral morphine to aid in the pain and keep him hydrated and out of the hospital. It took about five years to figure this out. One day I just got tired of seeing the same er doc all those times at Good Sam Hosp (Downers Grove) and I asked if we could have a scrip for oral morphine at home when Grandpa starts feeling symptoms. He said sure, that’s a great idea! DUH!!! God only knows why it took me that long to figure it out.

We have not had an occurence since March 07 (right before Kevie was in the hosp) God I hate hospitals!

Anyway, maybe this could be the answer to your questions. If it does turn out to be this, don’t fight the pain. Grandpa Bob would try everytime to sweat it out, and by the fourth day we are going to the er in an ambulance.

Good luck!

Dawn Kevies mom 😮

Caryn,
Thanks for your post. I have CIDP too and in May started getting the exact thing you are describing. I went to the dentist who took exrays and cleaned one of my filllings up and re-filled but found nothing wrong. I still get the pain and was told it is the nerve sensitivity caused by the CIDP. I have neurontin and used it alll winter for brutal pain in my cervical spine. I now find it quite useful for the tooth pain. It is a drug that interrupts the nerve impulse so it really quiets things down. The only side affect is fatigue but I already have that so it’s nothing new. Good luck.
Linda

I almost want to print this out and take it to the last five dentists I’ve gone to for a toothache ! One says it’s cracked but they cant see it, one says we need a root canal, one says lets take the filling out and look at it…nobody knows why i have a toothache. Maybe I know now ! Good ol nerve pain.
Good ol CIDP affecting me in a different area ?

I’m off all meds now. No treatment. No steroids. I’m on a wait and see approach I guess. I’m doing fairly well other than a few zaps now and then…weak legs yet…but I went up 8 flights of stairs when they took my mom to intensive care, so I cant be THAT weak.
I am very tired but with good reason and I am emotional…but, again, with reason.

But the tooth pain…..maybe this is it. It doesnt hurt all the time…but when it does, it does. They gave me anitbiotics and pain meds. I didnt want a root canal so I went to a different dentist for another opinion…the tooth seems fine and they dont know what is wrong.

imagine that.

Stacey