pain, pain, brutal pain

Sorry to here that Dick. I don’t know what to do about the pain, I just have it all the time I don’t know what is normal anymore. I just try to think or do something to try too keep my mind off of it. If you find out anything shout it out. I am in the 5 month on short term and i have one more month to go and if i don’t go back too work i will lose my position at work (maint) this will be a big cut in pay. Have to go back to the neuro june 29 and july 18th.

Hi Dick. Your story sounds almost identical to mine. I saw a new neuro and he switched me from Gabapentin to Lyrica and that has made a difference with the stabbing pain. I don’t know which narcotic you take, but I take Darvocet and Xanax. That combination seems to work. I have not needed a wheel chair yet, but in the big shopping stores, like Walmart, I have started using the scooter. My biggest problems lately are balance and fatigue. I get my ivig every 2 weeks. Did you get ivig? I do stretching exercises and try to keep walking as much as I can. We have to beat this ugly monster……..

I’m sorry about the pain Dick. I feel for you as I’m frequently in pain but not able to take any medications other than tylenol. I am sometimes able to concentrate on other things enough that the pain goes into the background but I’m sure you’ve had those ‘wake you up in the middle of the night’ zaps too that you can’t do much about. A few things work – epsom salt baths help with massive cramping if they aren’t too hot; alternating hot and cold packs sometimes helps the meningitis headaches and muscle spasms; and if all else fails there is always benedryl to make me sleep through it. But the nerve pain is pretty unrelenting and difficult to do anything about. I keep several bags of frozen peas around and numb up areas too painful which helps some but I’m looking for an answer too and not finding much out there to help. 🙁

I started taking a new pill for my depression called Pristiq and I realize I couldn’t take my Lyrica with it because it was to much. I got off the Lyrica and realize the Pristiq kills the pain better then Lyrica. I am on 50 mg a day
Pristiq is made for major depression but boy do I like the fact it help my nerve pain also and works better then Lyrica.

Sue

I wear a strong Fentanyl patch WITH 6 IVIG infusions a month. It took 2 years of this to even get the pain down to bearable.I felt like my body was in a shredder.I can see my thigh/calf muscles “jump” after any exertion.
I stumble and feel so spacey that I get embarrassed if out in public. Had to go to a doctor’s appointment today and realized had no business being out of the house.
I used to brag that I could get a cavity filled at the dentist without any Novocaine.
I do have a decent phydiatrist/pain specialist who sorta gets what I have and gives me the necessary pain meds.
I make myself walk because I”m scared about more muscle atrophy. I found some years ago listening to enlightening CD’s on pain/stress really helped soothe. I’ll send the name of the person if you want by PM.
I know you’re hurting. Please have a talk with your doctors to see what can be done.
Best of luck.

Dick S! I started out in 1989 with the same symptoms. And then a year later the nerve damage had progressed. That pain you are talking about sounds identical! I describe mine as feeling like I placed my hand in the stove and forgot my dishcloth to get the hot pan out and touched the pan and got burnt! Only that the burning pain never goes away and stays over and over again.

Well you see what happened to me this past week! Landed in the ER with mine and my neuro finally decided it was time for IVIG’s. And was given pulse steroids at the same time!

They gave me a new drug called Oxycarbamezeprine. Yep! Long name! I take that with my Gabapentin now and boy does it help that bee stinging fire pan burning pain.
Flexeril also helps with those muscle spasms. That might be something also worth trying. But that Oxycarbamezprine can make you feel sleepy alot at first. But I needed that sleep! Really did!

I hope this helps some! Bless your heart! I truely feel for you Dick S!
Going through the same thing you are going through and yes! I am seeing 25 percent of a wheelchair and cruthes now too! Sucks! Really sucks!

I have a beautiful mind with all these things I want to do and this crap is keeping me from doing them!
Hope my suggestions help! Feel better soon! I know! Easier said than done! This CIDP stuff really is not fun having and I wished these scientist woud figure out a cure for us all! That to me woul be heaven! Hugs
Linda H

I’m so sorry to hear you are agonizing. I am blessed to not have alot of pain anymore- I guess b/c the sensory loss is so severe that I dont feel anything… but I think I can relate to some of it, especially the burning.

When I had that burning in my hands, I would do anything to make it go away. All I could do was cry and pretty much panic. I held my hands under cold water and tried to trick my mind into making it work. Whatever was going on, the only thing that worked was time. I even tried wearing braces or splints on my hands at night.

Alot of prayers later, that burning hasnt happened in a while.

I might suggest the warm/cold therapy. My Dr told me to try it when I would have what I called moving pain. It would hurt in one place, then the next. Like my thumb,then the inside of it, then the hand, then the pinky finger at the tip, then the side…it was constantly moving and never staying in one place.

Try wrapping with warm cloths and then cold cloths or vice versa.

I’m sure you are pretty open with your Dr’s…let them know what you’ve told us and maybe by the grace of God, they can find something to help more.

I’m so sorry I cant wave a wand for you and make this all go away.
But, I CAN pray for you…and I will.

Take care,
Stacey

Another soaker to try besides epsom salts is Johnson’s Foot Soap-” Soaks Away Foot Misery” “Relieving Feet Since 1870”. It comes in boxed packets and you can find them in the pharmacy section of your store. It helps relieve my burning, not completely, but if it helps some, I’ll try anything. Johnson’s has Borax, Iodide, Bran for main ingredients. Sometimes the old simple remedies work better than the new stuff. Just passing a thought to you, sending a big hug, and offering up a prayer for you.
Emma

PS The CD’s I play on a bad days are the earthy ones-waterfalls, waves coming into shore, thunderstorms, birds singing, I play Kenny G. Anything without people singing. On a good day I play the Eagles, good and loud. You’re probably too young for the Eagles, but on a good day I surround myself with perky music. Play what relaxes you.

The relaxation therapy I use is lie on the bed; start from head and work down, including areas that don’t hurt (imagine that); trying to relax your whole body at once doesn’t work; too many areas of pain. Start with the earthy CD. Twist your head, push it against your pillow, RELAX. Go down each area, shoulder,arm, hand, individual fingers, then other side, continue to work down hips, thighs, legs, feet, each toe. Feel each muscle contract then feel each area of your body RELAX. Hard to do at first, but really works. Take a Morphine before, so that after the therapy is done (abt. 30 min.), you will be better relaxed. Give it a try Dick and see if it doesn’t help you. Others may have other suggestions, this is what is so great about the forum, someone’s words may ring a chord with you.
Good luck.

Dick
Here is my relaxation technique – similar to Emma’s – I’ve been doing this since I was about 12 so my body listens now when I ask it to relax. It does take practice for your body to realize what you want but you can do it. A huge amount of this is imagination which improves with practice also.

Lie flat on the bed, close my eyes and make sure no limbs are bent. I start at my toes and imagine a cool blue light entering my toes from the very tips. As the light enters my body and seeps through my feet it brings a relaxed, cool and heavy feeling. Some days it takes longer than others for me to imagine it the light creeping up my body – if I lose my concentration I just back up, imagine the light a few inches lower and start creeping it up again. Some days I can have the light go from my toes to my head in 30 seconds but most days it takes 45 minutes or so. In the meantime as the cool blue light travels upwards it pushes the hot red light of pain out through the very top of my head. Honestly some times I don’t even make it past my hips before I’m asleep but that’s OK because if I wake up I just start imagining that blue light again slowly creeping upwards, washing away the pain and tension.

You may think it is silly but there have been multiple studies that show your perception of pain has a great deal to do with how much it affects you both psychologically and biologically. When I am in pain to the point that I feel like screaming I am sometimes able to split my brain into the part that perceives the pain which is somewhere in the background and the part that just deals with daily life anyway. It does take a bit of concentration and there are certainly days when it’s impossible – but I’ve been working on this the last three years and I’m much better about it now. It feels a little like sleepwalking if that makes any sense to you – part of my brain is just processing the pain in the background – part of my brain isn’t even noticing the pain and that’s the part I try to keep in the foreground. For daytime pain I try to concentrate on other things like drawing or reading or a good movie or my recent venture into the World of Warcraft (online computer game). Sometimes I can concentrate to the point that I don’t notice the pain and sometimes not. I find that the more I am actively using my brain the easier it is to concentrate the pain away. Passive activities tend to give my mind time to wander back to “ouch”. As for music, I listen to Enya or the sound machine turned to “ocean” so I can imagine myself at the beach. 😀

It sounds really strange when I write it all out and I feel a little crazy telling you my secret pain-control methods but it does work for me. I’m allergic to narcotics and sensitive to most drugs so I have to make my brain take over that task. It became a matter of survival so I think that may be what tipped the edge on making this work for me. I really needed it to. :p

Share what works Dick – I’m still looking for the perfect fix myself. 😉

Julie

P.S. I just saw this article – may explain why the self hypnosis works… [url]http://www.msnbc.msn.com/id/31524376/ns/health-behavior/[/url]

Ohh how I remember my younger days! If only I could go back and do things all over! LOL! Gosh! I listened to all kinds of music back then and still have my old albums and still listen to them. The Beatles, Eagles, The Who, Led Zeppelin, Pink Floyd, Van Halen and I can’t forget The Doobie Brothers and Foghat! I was a weird one though! I listened to Linda Ronstadt, Charlie Daniels Band, Fleetwood Mac, KC and The Sunshine Band!

I love Music! I even listen to Beethoven and Bach! Yes! I like Opera Music too! So I guess we are all somewhat from that time frame of the 50’s and 60’s! A few in here older but still from that timeframe!

Dick S! I am like you! Some days when I don’t think I need the meds I don’t take it! I really don’t like taking meds anyway. But when I get bad off and can’t tolerate it anymore I have no choce but to take something!

My feet catch it alot and my hands with that burning. Last night I rubbed Jergens Lotion on my feet and there was something in that lotion that felt so good! The cooling in the lotion in Jergens has something in that lotion that really helped. Last week while I was in the hospital that burning really hurt!

This week though the burning is not as bad. Don’t know which drug helped. The pulse steroids or the IVIG’s. But one of them seened to have helped some! I feel better today than I have in a while! Not 100 percent better but have improved. My prayers go out to you and I hope you feel better soon! Hugs
Linda H

Hey Dick S! I too liked Julie’s idea about the Blue Ray of Light. Think I will try both of them at the same time the music and the light.

I actually missed the 60’s,70’s and 80’s era! We sure didn’t have as much violence back then. Crime rates were less and families were families back then.

Since you are from NC. Not sure if you ever heard of a Beach called Minnesott and Oriental NC. They were both close to Havelock, NC. My parents had a trailer down there and every summer and weekend we went to that beach! I had a blast in my childhood days. Some of the best memories I ever had since I got robbed of illness when I reached 29 years old. Was getting sick way before then but not hit bad until 29.

I used to walk that beach every morning and pick up sea shells and sharks teeth! I probably would break my next now trying to walk in that sand! LOL! It was a much quieter beach than Atlantic Beach but only if you wanted it that way!!:D

I stayed in more trouble down there at that beach in my childhood it was no joke! Drank my first bottle of Boone’s Farm Wine. Yum yum~ That stuff tasted like juice. But it gave a punch back a few hours later! I saw my first porcelian God that night! And my dad grounded me for months! 😀 😀 😀

To this day the smell of wine makes me gag! LOL! Hugs
Linda H

Dick, have you ever tried biofeedback? I was taught it by a psychiatrist many years ago, for my migraines. It works well for nerve, muscle and other types of pain. It works along the same lines as Julie described her Cool Blue light. Julie, it sounds like you are really in tune with your body-I felt that light going through my body as I read what you typed. Where were you earlier today when I was sitting in the er with my chest pains?!;) (thats the only drawback to biofeedback-it doesn’t always work on chest pains that take the breathe away-can’t breath deep enough for feedback when you can’t take deep breaths)
I use biofeedback along with a cd of spoken meditation with the sounds of waves and seagulls in the background. It doesn’t always work but it doesn’t ever cause me any side effects or bad reactions.:D

I agree with Stacey. I did the hot/cold therapy during rehab. I placed my hands in hot water for 10 seconds then into cold water for 15 seconds. They called this a desensitizing therapy. It helped me a lot along with some other similar treatments. Hope it helps you also. God Bless

Sue

Dick I do that all the time – it’s hard not to when you are used to feeling so poorly. It’s like a mini-celebration every time I have a good day. Yesterday I cleaned out the basement and I’m paying for it today but it was worth it – I can see the floor again. 🙂

Dick-just checking in to see how you are doing. Have a question-are you able to golf? My late hubby and I golfed all over Michigan and South Carolina. This, of course, was pre cidp, but loved it so and being outside. I have down sized a lot, but still have my clubs and once this crazy 100 weather leaves, have thought about a driver range to start with. I guess I will find out by trying it……..just wondered if others have returned to golf-sort of a way to try and get my mind off my pain. Did the ebsom salts help? Which music did you try first?
Emma

My story is much like yours, Dick. Came on slow over a long time then right before Hurricane Ike – bam – right between the eyes. Sigh. But the one thing I know for certain is that life is not for sissies as everyone has challenges – just different ones for different folks, so I don’t waste a moment wondering why ….

After 30 years of marriage I found out my husband had a secret life since he was 12 – which kept growing until … oh well, as my Russian grandmother would say, “B’nough!” of that subject … that’s been almost 3 years ago. But I feel it was preparing me for this challenge! And I learned a very BIG lesson about outlook through that experience. I really like your quote. Mine is “A glad heart makes a happy face” from Proverbs 15:13.

For some time now, pain is my constant companion. And I find that living alone can magify everything as I don’t have built in diversions.

But I also am determined to make the absolute best out of any situation I can. Until this hit me so hard, I was dancing 4 nights a week and having a blast! Love the West Coast Swing, Salsa, country and anything with a beat! Now I go maybe once a month for about 1 – 2 hours after getting ready by taking hydrocodone and having my best friend drive …

I was very high energy and am finding a big challenge in sitting still. I understand what you are saying about feeling better and doing something you know isn’t good for you, but doing it anyway. So I decided not to do that anymore. I try to save as much as I can of my energy and focus for work, church and play and accept the help that is offered me and pay someone to do the rest or ignore it. Have to find pleasure where it presents itself. I love to garden, now I pay someone to weed for me and sit in my garden reading a book (which I also love to do).

So I had to do several things to continue finding pleasure in living – get this awful pain under better control and change my focus. I have to work full time, so my doctor made a pain mgt cocktail for me. Right now I take 4mg Tizanidine at breakfast and 4 mg again at lunch, 300mg Gabapentin at dinner, then 600mg at bedtime plus 50mg Nortriptyline and 1mg Klonopin, with 10mg Hydrocodone as needed. When I wake up, think Johnny Depp in Pirates of the Caribbean 2 steps forward, 3 sideways, etc!!

At times, the pain is still unbearable, so now my doctor is trying me on Namanda. It was developed in Europe specifically for neuropathy pain. However, it was found to also slow down the progression of Alzheimer’s (so maybe the side effect will be good!), so that is all our FDA has approved for its use. But my doctor works miracles with my insurance and I started it last week and feel a slight improvement. It will take 4 weeks before I’m at full dose and then, if it’s working, my Dr will start weaning me off everything else.

I have 2 days of IVIG every 4 weeks and also have physical therapy 3 times/week – mostly stretching that seems to help a great deal. My doctor also gave me a prescription to get my hot tub repaired (ins didn’t pay, but Uncle Sam acknowledges …) and so I spend an hour or two every night under the big Texas sky while the bubbles and heat reduce my pain significantly. I even have a TV out there some nights!

Inside my house, I also have a massage/heat pad for my back and 4 heating pads rolled up like tubes (held together with rubber bands) to use on each arm/leg. Helps significantly. Last time my daughter was home from a visit, she bought me a power strip so I can plug all 5 devices in at one time – it’s too funny to look at but works oh so good!

I also am on a B complex from Wellness Support Network called “Nerve Support Formula” that is also making a big difference. I feel a big difference between when I’m taking and when I forget to order more (hey – maybe the Namanda will help that!!). I am very careful with my diet and use the recommended vitamins and supplements from the book, Nutrients for Neuropathy. I can tell a difference when I get lazy in this area.

So that’s what I do for pain, which still isn’t always enough … and so to change my focus, I have two journals I’m keeping – one is a praise or thanksgiving journal and one is a humor journal. Everyday, I can find something to be thankful about … and so I write it down and read when I feel down. Additionally, it’s a good thing I like sitcoms, because I am one right now! This is long enough because I was trying to address pain, but sometime I will share some stories from my humor journal …

Hope you find something useful in my ramblings and the read was worth your time!

Happy 4th!

Linda

I dont have alot of physical pain…I did but now I dont. I dont know if that’s a good thing.
I have alot of pain in my heart. I struggle with what is happening to me and so often pretend that it isnt. Funny how all the pretending can slap me in the face when I walk….but, I still pretend. I cant quite say, OK…I am the way that I am and I’m happy, b/c I’m so not.
I have family issues like many do….with a sister that dis-owned me when my Mom died. I have issues with a step daughter that hates me and my son. Step parenting isnt for sissies and I can see how and why blended families fail more so than the average married couple. It doesnt matter how much you love your spouse…kids can put a wedge in there…step kids even more so. I try. That’s all I can do. Sometimes it takes a toll…but, I have no choice. I love my husband beyond words…it’s all part of the package.

What I do to get rid of pain in my HEART is everything I like to do. One thing is planting flowers. I noticed you said you grow your own herbs…I recently purchased and planted ST John’s wort. Should be some very pretty yellow flowers but I wondered if they’d ever be of any use and if so, how and what would I do ?

I’m glad to hear things are just a bit better. I’m on day two of ivig…the home health care nurse quit, things are a mess but I need my ivig…the nurse they sent is new, she’s ok…I just dont know her very well yet.
I know I needed the ivig…major fatigue.

take care Dick,
Stacey

Dick S – I have been on the Namanda a little over a week now and the pain is going down daily. I’m so excited I had to “test drive” my new pain meds last night by going grocery shopping! That has been my biggest challenge in staying independent – pushing a shopping cart or even driving one of the electric ones has caused great pain for days after and pretty much uselesness of my hands/arms for several days. I felt so good last night, I made a second trip around the store just because I could!!!! Wanted to provide an update … can’t wait to see how I will feel in another couple of weeks when I’m at full dosage level!!!!! Also want to see how I do as my Dr brings down my other pain meds as this one increases. But I have to say, I’m more encouraged than I’ve been in a year!

Stacy – so sorry to hear about the pain in your heart. I know I had to go through a mourning process to come to terms with this illness. Just seems like I was picking myself off the ground from my 30 year failed marriage when this hit me … sigh. Had to change my attitude once again! All I can tell you is I have great faith that this life is only a prelude for the one to come. My praise/thankfulness journal was hard to start, but once started it’s an essential part of my journey and now I can’t quit! One of my friends was on a lot of anti-depression meds and started the thanksgiving journal and is now off all the meds. I will NEVER give up on getting better – but I know my attitude has a lot to do with my healing. So like you, I look for those things that bring me pleasure. Thank you so much for sharing your heartaches – you are in my prayers.

I’m glad my pain meds don’t cause my mind to be fuzzy. The pain patch is a good choice for me. It’s a constant level of drug directly into my system for 72 hours.
When I was taking Methadone I felt fuzzy.
I find the IVIG makes me feel crummy/down in the dumps the day afterwards. My body fights that drug but it does help so very much.
The next day is another day gone. Usually in bed.
I surprised myself today and planted a few more delightful flowers. My therapy is gardening and in winter I plant lots of Pansies.

Isn’t it amazing how many folks now use the store scooters?
I love the ones at Lowe’s cause they really go fast””’

I’m on nortriptyline, tizanidine, klonopin, nortriptyline and hydrocodone. With all that, the pain at times could still be relentless. There was a period of about 4 months where I cried daily. I have to work as my potential disability income isn’t enough to support me and I live alone. I run a highly technical team and have to be on my toes as most of them hold mutilple masters (I have an MBA). We (my doctor and I) have tried numerous combinations of various things to knock down my pain level. Nothing’s worked until now … for the past two weeks I’ve been on Namenda and every day my pain level goes down! I am so encouraged as this is the best I’ve felt ALL year!!! Next week my dose goes up and we start weaning me off all the other meds. My doctor believes this might be the only one I need with hydrocodone on demand on those days I overdo. I’ve read that neuropathy pain is some of the hardest to manage as most traditional pain meds don’t affect/block nerve pain. This has been my personal experience. There have been times I’ve had so much in my system I do believe I could stick a fork in my face and not feel that but still had that deep intense horrible pain. Namenda (memantine HCI) was developed for nerve pain in Europe. It helps promote normal glutamatergic activity in the brain. Glutamate is the major signaling chemical in nature and is used for conveying messages from nerve to muscle. It is mainly present in the central nervous system, brain, and spinal cord where it plays the role of a neuronal messenger. The Namenda helps regulate this activity and is significantly reducing my pain. Well – y’all can read up on glutamate and how important it is … I’m just totally sold on this already!

Here in the US it is used for Alzheimers … so I’m hoping for a double benefit (better memory – LoL!!!). I’m just so excited about the results so far, I can’t help but put it out in this forum in case someone else wants to get their doctor to let them try it. I’ve been on this journey to control pain for almost a year now and this is the very best!

Good luck to eveyone.