Off the charts pain.

Hi Ken, Sorry to see you are having an increase in pain as well. Since getting sick with a weird virus(that has gone through the ranks here):( last month I have had to increase my neurontin to try to get some relief, it is just barely nibbling at it right now. I was up to about 30 mins of standing time before I had to get off my feet due to pain, now its back down to 10 mins. Sitting is the same way, I guess its my body’s way of telling me to lay down and get more rest:rolleyes: . This up and down stuff is what I really get frustrated with about this syndrome, just can’t make any type of plans farther along then one or two days at most. I hope Both You and Dick, and All others, can get some relief soon. Gotta go, been having kidney stones the past 3 days again, just another painful situation on top of the rest;) Take care.

Ken,

It’s funny (well, not funny, but you know) that you use the term crushing. At this point, we’re all pretty sure I had cidp for 5 – 6 years before I got diagnosised and I used to complain of this “bone crushing pain”. There was really no other way to describe the intense pain that literally felt like my bones were being crushed by somethine huge and heavy, like a refriderator.

I tried all of the celebrex type things, tried some low dose anticonvulsants that I don’t remember, tried elival (big mistake!), tried neurotin (which worked for a finally, but then I started getting break through pains), and finally found sucesses in a trileptal-doxepin cocktail. Baclofen got added to the mix as well. I know its not the traditional nerve pain medicine route, but this particular anticonvulsant mix has done the trick and kept my cidp related pain at bay for 2 or 3 years now.

If neurontin/lyrica haven’t been working for you maybe its possible something like that would. Hope so.

torradol injections will help a lot on the days that you have really bad pain. The post before mine has suggested some excellent unconventional mgmt of CIDP induced pain. Neurontin, Baclofen, paracetamol 600mg dose might help as well.

torrodol works wonders and is non narcotic so try it out, i cant use any pain meds that cause constipation. I hope this helps you. My best wishes to you

Started Toradol shots at pain clinic. The doctor said he didn’t think any problems would come from me getting an injection 2-4 times a month.It’s basically an imflammatory non-narcotic so he can give them as an added helper with all over pain I have. I’m already on massive pain meds and get scared at the dosage myself.
The other pain docs didn’t think I had anything but Fibromyalgia.I was given MS type muscle relaxants that caused terrible migraines and insomnia.
Sometimes the pain gets so bad I want to scream my head off but might scare the cat.Cold rainy days are the worse.
If only the nerve drugs like Lyrica had worked. New research for better pain meds always in the process and I’ll be in that line. Thankful the meds let me do simple basic things like walk to the mailbox or go to library on a good day.Then the days I stagger if I can get up as I’m so tired and my body is shutting down.

Started Toradol shots at pain clinic. The doctor said he didn’t think any problems would come from me getting an injection 2-4 times a month.It’s basically an imflammatory non-narcotic so he can give them as an added helper with all over pain I have. I’m already on massive pain meds and get scared at the dosage myself.
The other pain docs didn’t think I had anything but Fibromyalgia.I was given MS type muscle relaxants that caused terrible migraines and insomnia.
Sometimes the pain gets so bad I want to scream my head off but might scare the cat.Cold rainy days are the worse.
If only the nerve drugs like Lyrica had worked. New research for better pain meds always in the process and I’ll be in that line. Thankful the meds let me do simple basic things like walk to the mailbox or go to library on a good day.Then the days I stagger if I can get up as I’m so tired and my body is shutting down.

[B]Frank’s dibilatating pain never left him, he lived with it for 6 long years and at times the drugs didn’t help at all. [/B]

My pain gets so bad I curl up and try to sleep or at least medtitate into another place.
When I was on the ER gurney passing out from Acute Pancreatitis the moronic ER doc kept asking why I was being “so weird”. Quiet is weird?? My girlfriend told him over and over I was trying to handle the pain.When he finally gave me a pain shot he said “I bet you liked that…didn’t you….”
I think when the days of intense pain come I will take a pill combo to try and sleep it though. Maybe it will work.I feel like I have to beg for pain meds-am I the only one who feels this way???
I don’t want pain pills-just relief. Before I was diagnosed I kept being told so many times to growup and learn how to handle my pain. Like I was misbehaving.
On that note my cat is giving me the “where’s my late night snack”.

I mean, what GOOD does it do to cry or yelp or whine or writhe when you are in SUCH PAIN? Takes up too much energy and doesn’t change things one bit! Being given ‘narcotics’ in any hospital for the kind of pain we can have is like putting a ‘Band-Aid’ on a large deep body gash…= Not much? Hummm? EXCUSE ME? When have YOU felt as if an elephant was sitting on you crushing your bones and you were also being inserted into a human sized french-fry vat? Try it sometime, tell me how it FEELS!
Ken, I surely wish I had some sort of ‘magic wand’ to wave and make things better…Maybe just the IDEA of it happening could help one teeny bit?
Goodness Knows, this stuff does NOT give up, does it?

Ken ~ just wanted to let you know that I am remembering you and the others (me included) in prayerful thought, as you continue to suffer with pain. It is no fun 🙁

Ken,

Sorry I have been a bit slow to respond. I feel for you. Chronic Pain is something that many of us have to live through. I know that for some, CIDP is not as painful as it is for others. Some lose a lot more muscle function, and some have sensory loss. Some have all three plus.

The one thing we all have is a chronic illness and some levels of chronic pain. It is totally different when you have the pain, and it will be there tomorrow, and the next day, and the next day, and so on. AND you know that it will be there. Knowing that you have to face the pain everyday changes your outlook on things.

I have read several books, and many articles on chronic pain. Some people tell you to suck it up, that you can get through it if you are tough enough. I say bull#%$%$. They haven’t lived it. You do what you can, the best way you can. Some days that means resting in spite of what everyone else wants you to do.

I had volunteered to help out at the church for the youth one day last week for two hours. I felt bad and called in a couple of hours before my volunteer time to cancel. I told them I hurt and needed to rest. They called back, and said they couldn’t find a replacement, and that I would “only” be sitting and “helping out” run the desk for a bit. They kept me over four hours and I was in bed for a whole day, and semi-rested the next day. Then they said, “Well it wasn’t that much, how bad could it be?”

It is different for us. I did a dumb thing, I knew it was dumb when I did it, and I paid the price. I just need to learn to be smarter the next time. I am happy to help out whenever I can. And I do. It’s just that when I cannot, I need to stick to my guns and just say “NO”.

Some people think that you can work hard and get through anything. Some people think that you can have a higher pain tolerance if you REALLY try.

These people are not us. These people do not have the pain that we have. I do not succomb to my pain. I medically understand why I have it, I understand what makes it worse, I try my best to treat it, I accept the fact that I have it. and most of the time I deal with it. I must deal with it.

I am starting a Chronic Pain support group/Bible Study at my church. We will explore all of these very things, and fit it in with Faith Family and Friends. I don’t have all of the answers, but I do know that people do not need to be treated like second class citizens because they deal with pain constantly. People are not a failure because they cannot “overcome” their pain.

Understand it, treat it, grieve for your losses, accept it, move forward the best you can.

Pain stinks

Dick S

I am so sorry to hear that you all are havingg such bad pain. As some of you, I too, suffer the chronic pain. I have sensory, motor and autonomic.

I take lyrica for the nerve pain and so far it works ok, but I just had to have the dose raised again.

I also have bone and muscle pain and for that I use a fentanyl patch and percocet. I am still in great pain every day, but it is more tolerable having the meds. Without it, I would be a goner as I could not take it day after day.

Keepin you all in prayer.
Blu

I too suffer from bad pain. I feel burning in my feet and legs. Additionally, and this is the worst part, , my lower legs feel like someone has a death grip on them. If you ever had the leg pains that were called growing pains, it is that bad. I find the word crushing interesting because that is a good way to describe it also. I take Neurontin and Cymbalta. The Neurotin works wonders for the shooting pains but doesnt touch the aching, crushing pain. The Cymbalta worked good for that for a while, we increased the dose, it worked good a while again and now the pain is back. I may try Lyrica but in the meantime, they gave me Vicodin. I go back to see the neurologist in a couple of weeks and we are going to investigate my options then. I only saw one person here mention Lyrica. Are they any others that have tried or are taking Lyrica?