Information Sought On Pain

I am so sorry to hear you are in so much pain. I was diagnosed with CIDP in April of 2010, and I have to admit I don’t know much about GBS. Can GBS last so long? I thought it was more of an acute condition, and that someone with GBS would (hopefully) gradually improve over time. Is it possible you have CIDP or some other chronic neuopathy? I too have clumsy hands and will get the severe stinging, stabbing pain, especially in my lower legs and feet. I take Lyrica 150mg three times a day as my maintenance dose. When my pain gets really bad, my pain management physician has me increase my Lyrica dose as high as I can tolerate it. I’ve taken as much as 900mg in one day, which is a huge dose. It helps, but at that dosage it really puts me into a brain fog, which isn’t necessarily bad when you are in such pain. Have you tried IVIG, it really helped me with my pain.

Sorry to hear you are in so much pain.

Have you tried IVIG? It has really helped with my pain.

Good luck,
Rhonda

have you tried gabapentin (neurontin)? pain never goes away but it will give you periods where the nerves calm down somewhat and dont jump and twitch and burn. but my pain has never gone away alltogether. tried to get off gabapentin and went right back to it when I was almost off it altogether. the pain was too much to handle

hello, first thing….. if i could be there by your side and just hold your hand and comfort you. I would. I’m so sorry that you are having such a hard time. I was relieved to hear that you have a strong spirit. I also was diagnosed in 2008. I still have much fatigue. my muscles still hurt. (not as bad as yours) and I have very bad flare ups off and on from pain. my question to you; have you heard about cymbalta? Ask your Dr. about it. over here in canada, dr.s use cymbalta for chronic pain. of course every person is differen and works differently for different people.
I love the hottub. works wonders for me. but l must be careful. to move around in water feels very good. wh.en I am in pain.
your in my prayers. Take good care always.

When you saw your doc did you ask about IVIG?

Did doc mention it as a possible treatment?

the hot tub or warm baths really help me.

I sleep with rice packs, that I put in microwave and heat up

take care

Good luck with trying to treat your pain. With the birth of my daughter 5 years ago I came to realize that my quality of life was important, and that I owed it to her to try and be as pain-free as possible.

There will always be people who don’t believe that GBS sufferers have ANY pain, even years after the initial bout (my GBS was in 1995). Some doctors (and other people) think that their neurology patients only want narcotics for other reasons, [I]besides[/I] pain relief. I think all of us GBS-ers just want ANY relief, from whatever will work, with the minimum amount of side effects and health problems possible.

My nerve pain at times has been some of the worst things I’ve ever experienced in my life; I’ve forgotten what it is like to be pain-free, but there are ways to help control and “tame” the pain. I have been taking Lyrica, but have recently tapered down from 300mg to 125mg a day, because we will be trying for another baby soon. I can say that the Lyrica definitely helps. I didn’t want to try Cymbalta because I am leery of the SSRI type drugs (such as Cymbalta, Paxil, etc) because of the heavy-duty changes they can trigger, plus they are SO hard to come off of if you decide to.

I’ve definitely heard of hot tubs raising blood pressure, in fact I was advised by my doctor to not use any hot tubs for that reason. A nice heating pad sometimes can help nerve pain (you can get all-natural ones that heat up in the microwave).

I hope that you do get relief from your pain; please keep us updated~!

Istaroaz:
I have heard that IVIG, although a staple treatment for CIDP, should only be administered for a short period of time in cases of GBS. I don’t know why, but that is the apparent accepted wisdom. I don’t know where you are in Ohio, but I can recommend Dr. Zivcovic at the University of Pittsburgh Medical Center. He is an excellent neurologist in the UPMC neuromuscular clinic.

Istaroaz:
I have multiple autoimmune syndrome, which now seems to include CIDP. One of the medicines that I take for pain related to my RA is Tramadol. Surprisingly it also cuts the edge off of the leg, and arm pain.

Unfortunately it does nothing for the burning, or clothing discomfort. I agree that the Lyrica is the best for that. I understand the torture this causes, I have had it three years. Hate socks, gloves, and covers over my lower extremities.

I am with the rest of the people here in saying you should try IVIG. They gave me it when they thought I had GBS, and then again the second time before the changed me to CIDP. It gave me a bit of a headache, but the results were amazing.

Hand in there.
Keith

My primary, overriding complaint has been excruciating nerve pain as well as a number of neurologic issues (foot drop, now both feet; stiffness; swallowing problems; paresthesias; balance/coordination;dysautonomia;ataxia; muscle spasms;bladder; breathing challenges; heavily dependent on a cane). As a former marathon runner and fitness instructor I thought I knew pain – but this nerve pain sent me to the ER and left me on the floor crying in a ball. Crushing pain – legs on fire, feet covered in glass shards, felt like I was being stabbed with an ice pick and being plugged in to an electric socket. On a scale of 1 – 10, pain was a 20 and counting.
Long string of pain meds including dilaudid, baclofen (neuro muscle spasms); zofran (nausea/vomiting); frova (migraine) but hands down the BEST pain thing that helped me is IVIG. Other meds cover break through pain but IVIG is THE best thing to turn down the pain. On the two days after I get an infusion I hardly have to take pain meds; as the days get closer to my next infusion I have to use a lot of pain medicine. By the day before the infusion all I do is cry – no sleep at all, just excruciating pain.

My advice to you =get help right away. And get to one of the 7 Centers of Excellence for CIPD. The longer you wait the harder it will be to get your body in to remission. Get help from a leading CIPD doctor (check out the list of top 7 Centers for excellence for names); other neuro muscular doctors will simply not be up to the task of managing your health or your pain. You can get on a list of those premier doctors — it will take weeks to get an appointment — you can keep being treated by your current doctor until then. It is worth your time and effort to get to that top doctor -they have seen your type of nerve pain before and will now how to help you.

Also – get yourself to a Pain Management Doctor with experience in neuromuscular diseases. I was treated by another Pain Management group who were caring but they did not understand the complexities of CIPD and complex neuro muscular diseases. I have a new Pain Mgmt Dr with expertise in neurologic diseases – he actually was the one who pushed me to go to one of those centers of excellence. He was also the one who encouraged me to get on the right amount and type of pain meds to give me a better quality of life.

Note: PT is NOT a good idea, unless you find a neuro muscular disease physical therapist who specializes in nerve damage. Also – hot tubs are NOT a good idea – too much stimulation. A hot bath may help and so might heating pads. No massage, either. Avoid any/all stimulation until your nerves get a chance to heal. How do I know this? I tried and each time it took me days – miserable, endless days – to recover. Top docs have discouraged the above until my legs have had more time to heal. And PS: as the nerves heal they are painful. You’ll need a good team to help you deal with them as you improve.
———————
Diagnosed CIPD and dysautonomia 7/10; suspect Stiff Person Syndrome 1/11. borderline positive for all IGG gangioslides (GM1,anti-asialo, GD1a, GD1b) and high GAD 65. Awaiting results on paraneoplastic antibodies & TTR mutations.
Began IVIG treatment 7/10, pain improved somewhat but still not tolerable. Painful Neuropathy has progressed from right foot to both feet and now both hands. Stiffness accelerated in November, 2010. Current IVIG dose: 25 grams every 7 days; next week increase dose to 15 grams every 3 and then 4 days (2 x/week). Praying that will help pain.

PattyO is right. IVIG helped me with the nerve pain. Mine was off the charts & even with very strong pain meds it just couldn’t touch the pain. It is important to get regular loading doses of IVIG for it to kick in and help.
Please investigate the best neuro & pain management doctors to help you feel your best.

A nice heating pad sometimes can help nerve pain (you can get all-natural ones that heat up in the microwave).

If you are handy with sewing machine or know someone that is you can make your own rice bags.

Use long grain rice,not the instant stuff. Put into a small pouch like bag and double bag and sew it shut.

Throw in micowave for 1-2 minutes and instant hot pack.

I find they stay warmer longer then the bought ones and are way way cheaper!

[QUOTE=istaroaz]But today is the worst I can’t even stand , walk, or even hold onto things, It even hurt & was difficult for me to use a push button phone without severe pain !! I took my meds for GBS, Lyrica 200 mg 2 x a day, Baclofen 20 mg 3 x a day & even took a strong rxed pain pill & still have all this pain. It is so severe I was crying on & off durning the day.

All input welcomed[/QUOTE]

Hello Istaroaz,

I’m a 6’4″ 18-stone male who regularly cries himself to sleep with the pain of GBS symptoms, which began in April 2010 so you are certainly not alone.

I am currently taking 3.6g (900 mg x 4) of Gabapentin a day, which is a massive dose but indicated for use in GBS patients. It was not helpful until the dose initially reached above 2g/day so it may be worth talking to your GP about increasing this. I alse take 75 mg Lamotrigine, which also seems to have some effect.

I take 2 x 50 mg of Tramadol three times per day and 2 x 100 mg slow released Tramadol at night.

I take 50 mg of Oxycontin for the worsening pain at night and then take 1 mg/mL OxyNorm as required for breakthrough pain during the night. I used to take morphine, but found it far less effective. My GP is currently considering the use of Fentanyl patches as the next step.

Hope this helps, if only a little…

Adrian.

Hello Dear
I’m sorry that your in so much pain. I went through hell For a long time until i went to see Dr Teener @ University of Michigan, If there is any way You can see him, Do so, and soon. My so called expert Neurologist Did testing for over 10 months and could not find anything wrong and all the while I’m wasting away. 3 hours with Dr Teener I had a diag and a treatment plan..

Hang in there. I know you Ohio girls are tough!

hi my dear iz, i hope you don’t mind if i call you that? i was reading your post and i am so very sorry you are going through so much pain. i know my family and friends have no idea how much i hurt at times…only my dog gets to listen to the loud screams and cursing when i get overwhelmed. i do know the people here understand everything we feel because they’ve been there. hang in there, i know i’ll be praying for you…god bless u
ms.judy

istaroaz, please let me (and us) know how the patch works out. I do hope it helps you.

I am always in pain but I (and my pain management doctor) have been reluctant to try anything stronger than what I have been taking….I’m curious how much the patch will help you.

Good luck~!

You got a lot of good input on this thread. From my 22 years of dealing with CIDP I would agree with the posters here that are encouraging you to seek out top medical professionals and Neurologists and be your own best advocate. Don’t delay. If you think a 4-6 weeks out appt. (or more) is too far out get aggressive and insistent. For me I learned from my first episode not to be passive. The longer the deterioration goes, the longer and more aggressive the treatments take and for me, the more permanent some of the residual disabilities took hold. (foot drop, finger and toe contractions, vision problems, etc.

On my second attack, when some Doc or other medical professional (in some cases I would say that tuned out to be an oxymoron) I would literally just show up in my wheelchair first thing in the morning and just wait. As soon as someone ‘no showed’ i forced them to see me. After a while the medical community began recognizing my tenacity and I started getting my appointments right away.

I also studied everything I could about CIDP. This organization really is the best. I have attended some of the symposiums and read everything I can get my eyes on. My Doc’s recognize my level of knowledge and are receptive to my input. It should be that way for doctor/patient relationship.

I take gabapentin 800mg 3x/day and that helps. I also have oxycodone as a back-up for breakthrough pain. Most Nueros tend to steer CIDP patients away from narcotics, but it does help me especially at night when i’m trying to sleep and going through all the pain you have described. At least it takes the edge off. I also use rice packs in the microwave for my feet.

I hope you get turned around on this and i know you will.

God Bless you

I was watching a documentary this week and they did a short story on Dr. Robert Holcomb, a neurologist in the field of Neuromagnetics at Vanderbilt University Medical Center.He was helping a patient with a bulging disc that was in great pain. He is experimenting with a new technique called MagnaBlock. He tapes 4 magnets on her back and did alternating current – can’t rememeber if it took weeks, etc. But it relieved her pain. It is his hypothesis that this halts the positive ions that transmit pain to the brain. You might want to research this.
Have you tried the homeopathic medicine called Arnica Montana. My friend’s doctor had her take it after her abdominal surgery. It relieved her pain; it is not pharmaceutical and no side effects. They are little pellets that you put under your tongue. You are not supposed to touch them. Homeopathy sounds like it couldn’t possible work, because the more the substance is diluted, the stronger it gets.I tried it once and was breathing more fully than I ever did in my life. It only lasted a few weeks in my case. I took Arsenicum for something else and got that great result. SO it couldn’t have been the placebo effect. Boiron is a reputable company in this field.
I know alot of people of this site are not into wholistic ways, but some of them do work. I think I was able to keep the inflammation and pain down during my second and worse bout with GBS because of the supplements. I did and do not need pain medication – not aspirin or ibuprofen.
Malcom Forbes once said that anyone who thinks money is important has never been sick or is. I think he was talking about pain.
Good luck.

Hi Liz,
Sorry to hear you are having such a hard time. I can totally relate to the pain you are feeling along with the loss of strength:confused: I have been on IVIG for about a year and 4 months now and it has helped a little. I have tried all the pharmaceuticals my neuro has suggested, like Cymbalta, lyrica, neurontin, savella and then some. Every one of them has given me horrible reactions. Lyrics made me gain 40 pounds, all but neuron yin made me a zombi. Neuron tin caused side effects of memory loss, but it took years to get there.
I have had positive results with IVIG with nothing but the common side effects from the treatment like migraine, back aches, etc…….
Because IVIG is administered at such a high dose at the beginning it is administered in the hospital so you can be closely monitored. If your doctor is recommending it, try not to shut it out so quickly. If anything, it can buy you some time until you figure out which route you do want to take, while keeping you from severe relapses. I know it’s scary, but it’s a scary disease.
Btw: have you been checked for CIDP. You are mirroring my symptoms and they are chronic. I have good days, but for every 1 good and active day, I pay for with 3 days in bed. That isn’t a relapse for me, it’s a symptom of my CIDP. GBS is more of an episodical disease and from what I have read, you sound to have a chronic condition.
All my best. I love to hear your spirit is what has gotten you out of bed. I have been told my will has kept me out of a wheelchair. Unfortunately my will has not been able to combat the chronic fatigue that keeps me in bed for days at a time.
Be well.

I was dia in March 2005. I have still have secret pain, much like u having. I been on a pain since the onset. The patch is called Fentayl 100mc I where and change every three day. Plus I take Neourtin 600mg 3 times a day, I’m also take Lortab 10-500 for the pain. When I forget to change patch in 3 days. I feel all the tingling again worst like ten times. Like u can’t even have any type of material touching me at time. But these medicine seems to controlled my pain 99 % of the time. Once in awhile I get extreme flare up, nothing seems to help. Just rest. I’m here in Ohio too, if you have any question for me

Chuck
[email]Chucklesco99@aol.com[/email]

I apologize about mentioning Fentayl. I didn’t read all the post, before I replied. I was at Riverside hospital when I was admitted first, than I was transfer to Dodds Hall at OSU hospital. They should be able to help you . Good Luck

Chuck