AnonymousMarch 23, 2011 at 9:49 am
I was dx in Dec ’10 with CIDP but had no pain until recently. Just wondered if what I am feeling is what some of you experience. I know we are all so different that mine might be different than others. I have started feeling “shocks” like when you touch a hot wire or like when you get tested with that dreaded nerve conduction test! They happen any/everywhere on my body. I have received my loading dose of IVIg and 3 subsequent treatments and just started feeling these prior to my last dose (last Thursday). There were only a few of them before I had my treatment but now are more. When I mentioned this to my neuro, he said it was probably from my back (I have many issues from degen discs to bulging discs, to fractures). Personally, I think he is not wanting to admit that the IVIg is not working as good as he wants it to (me too). I have had much improvement with strength and twitches have diminished but this pain situation is a surprise. I would say with a scale of 1-10, most of my pain so far is between 1-3 sometimes a 4, and lasts between 1-5 seconds. Comments please.
God bless us all!
AnonymousMarch 23, 2011 at 6:21 pm
I often will get a little more stinging and burning in my legs and feet after an IVIG infusion. My neurologist told me that as I progress with healing, I may ironically get more pain. As the nerves recover, they become better at transmitting the pain signals again! It usually passes.
March 23, 2011 at 6:37 pm
I have had the pain and electrical tingling. Can I assume you take Neurotin or the equiventent for this . Without it I would be uncomfortable This is my third day after treatment and today seems a little stronger. It may be the IVIg or just a sorry day with out explanation.
AnonymousMarch 26, 2011 at 5:43 pm
Some CIDPers experience little or no pain. Some are nearly incapacitated by it. Pain with CIDP is very individual and you will get a lot of different descriptions of it. I can give you some general information which I hope you can apply to your specific case. Let’s divide and conquer:
Nerve pain or the pains caused by damaged nerves: If the nerves themselves are damaged the signals are not making the trip from brain to receptor and back to brain again. The result could be no signal (numbness) partial signal (tingling) or overload ( sharp zinger or blast). If several nerves are involved in a bundle, the reaction could be quite severe !!
In a “back pain” scenario, a compressed nerve creates tingling when it has the opportunity to “decompress”. As it returns to its original size and the signal gets through, tingling happens. Is the Dr. referring to tingling and pain happening when IVIG works and nerves repair and grow? I guess so.
Sometimes nerves and pathways are destroyed through the actions of CIDP. These pathways would never return a signal to the brain. I don’t know if that generates pain, ask an amputee if there is pain in a limb that is no longer there. I wouldn’t think that one or two destroyed nerves would cause a “phantom pain”, but if there is severe degradation and a lot of numbness, there might be some of that kind of pain.
Then there is the muscle and tendon pains associated with CIDP dysfunction. If the foot drop, or other CIDP action becomes neuro-muscular, you could lose muscle strength and tone. With that loss, tendons could lose flexibility and mobility will become more difficult. The pain with that could come in the form of tendonitis, muscle cramps, muscle aches and pains, etc. That would have to be treated differently from the nerve pains.
Then unfortunately is the mental pain and depression of dealing with a long term chronic disease. That treatment is separate in its own right.
None of these discussions even talked about the CIDP itself. And here, I won’t.
What would I do for pain? I would try to classify my pain. Is it neurological? Is it muscular? Am I depressed? Is it a short term pain? Is it long duration? Does it hurt in the morning, at night, all day? Is it sharp, dull?
(I for one don’t like the “blame it on the back idea”) I have a bad back as well, and I know the difference between what my back pain feels like and what these shooters feel like.
You talk about the shock pains all over, are they mainly where your CIDP is? or are they in other places as well?
I’ll check back in a day or so and see what you have posted
AnonymousMarch 27, 2011 at 3:20 am
Sorry to hear about your dx:( If you are experiencing that little pain, be grateful…… If it gets worse, be worried!!!!! I would not rest solely on your neuro’s Dx of your back problems being the cause of your pain. You are describing neuropathic pain. Tingling,zapping, stabbing pain, pin pricks, numbness, all of these sensations exist thanks to our sensory nerves.
Here are things to start paying attention to:
Is your pain always in the same area
Is it the same type of pain (burning, pin pricks, etc)
How long does it last
Is it followed with loss of strength, (motor neuropathy)
Are you experiencing any loss of strength *pay attention to your feet for foot drop and you hands with your grip*
I have heard that when the nerves start recovering, they get hypersensitive which would explain the increased pain. BUT, you are new to the disease and dx. You are going to notice some changes in your body. Maybe a zap down the arm when you turn your head. CIDP is a tricky little bastard and I don’t want you thinking your nerves are in recovery, when they could be demylinating. Stay on top of your nerve conduction studies. Get them every 6 months since you just started your treatments. If there is no signs of slowed velocity in your NCV’s in 6 months, then congratulations!!! You caught it on time and could very well reverse some of the damage caused. If there is slowing, start asking your doctor for other options because the IVIG is not working. Right now, all you can do is listen to your body, document every feeling on good days and bad, I personally have a journal that I write in everyday and take it with me to all my appointments. Just because my doctor sees me on a good day, I don’t want to forget about telling him about the 3 days I couldn’t walk due to the raw sensation on my feet. It is very important that you document everything from fatigue to headaches, from aches to physical challenges you accomplished.
The next 6-12 months are going to be a test for you, your disease and your treatment options.
AnonymousMarch 27, 2011 at 5:44 pm
I, too, experience pain as you describe it. I have had some of the oddest things happen and I have been on ivig since January. They range from lower back pain to a hip socket that feels like it is on fire. I even went to the doctor to have him pop my back because I thought that was it. He told me to see a physical therapist. Ha. Two days later all pain was gone. I am certain it was the cidp. I have read that this disease causes funky things to happen thus causing doctors to chase symptoms all over the place (for example my hip pain). It is truly a crazy disease. I am starting to get over being depressed about the whole darn thing and just trying to take it day by day now. I have hope that someday it will go into remission. After reading many of the posts on this sight, I feel lucky to be able to get around as well as I do. Anyway, hang in there and have a great day! Paul
AnonymousMarch 29, 2011 at 1:33 pm
Well, thank you all for responding. It’s good to know we are not alone in this battle!
Dick @ What I experience in my pain is minor compared to much I read here and I am thankful for that, but I wonder if these new feelings are just the beginning…that is why I am asking questions now. As I mentioned, I was dxed in Dec ’10 but I had only started feeling symptoms in Sept/Oct ’10. So I was dxed rather quickly which I am thankful for also. So, that being said, I didn’t have a lot of deterioration to my nerves that I know of. Weakness, shakes, tingles, fatigue were what I experienced mostly. Now with this onset of sparks & shocks AFTER the IVIg I have been on since Jan every 3 wks, it concerns me. The shock pains are all over not just where I felt the CIDP initially (mine was only hands and arms, not feet). Now I feel these shocks all over, back, stomach (internal), toes, heels, buttocks, tongue (weird), you name it! There is no way it could be from my back issues only.
guskno @ I also keep a log as you suggested, thanks. And I do take it with me to the doctors when I go for infusions. I have increased in my strength very well and that seems to be good enuf for doc, but these other issues have me wondering. I will present them to him again when I go April 7th and see how he puts it off this time! My 6 month won’t be for a bit yet, so I will continue to keep track.
Paul @ thanks for your input and I hope you do well in your therapy. Keep us posted.
Goodney & GAT @ thanks for your replies and encouragement. This site as been real helpful to me over these past few months.
God bless us all! 🙂
AnonymousMarch 31, 2011 at 10:22 pm
Altho I don’t think It’s unheard of.
I’ve searched the web to try and learn about how, why and how it feels when nerves die and then regrow. Do searches yourself, but you’ll likely find deep deep research on sea slugs or newts.
The sense of all I’ve read is that when nerves die? There are big shocks as their circuits aren’t completed anymore. When they start to regrow? Similar shocks go out trying to find their connections! Sometimes it works? Othere not.
The pain at onset that you escaped? I GOT and big-time. Tho? At times not-feeling ANYTHING can be more distressing as feeling the pain..[at least you know somethings’ sort of working-tho not well?] Personally, I’d rather have the pain, unless it’s to the can’t complete a sentence point..know what I mean?
I’m guessing that your IVIG is the process of helping stop nerve deterioration and that nerves are trying to CONNECT! Gotta warn you? At times those new ‘charges’ will make you gasp!
I’d try to keep a sort of notepad of when these zaps occur and how long they are? As well as how often. Docs love these sort of facts, tho they do little with them? They could use such comments to justify more IVIG. Better for you in that it makes your insurance company happy.
Paul? The lower back pain could be either liver or kidney issues…were you super hydrated before, during and AFTER infusions? There’d be a lot of ‘wastes’ to tax these organs and hydration helps things along a lot easier.
I’ll be blunt, you cannot almost hydrate too much at such a key time. Just do it till you slosh slitely and afterwards for two days? Then it’ll be lots easier.
Good luck to both or you!
AnonymousApril 1, 2011 at 3:31 pm
I experienced electric shocks several times a day; feet, hands, abdomen, on the side. I dont take any pain med for this because it only lasts 5-8 seconds at a time and I can tolerate it. But they are pretty annoying. Are these electric shocks a good or bad thing? What does it mean in connection with the nerves? Are the nerves healing or are they still demyelinated? I’ve been getting IVIG for 17 months now. My fingers in right hand are off and on numbish. Does anyone know if these sensory type of symptoms linger on?
AnonymousApril 3, 2011 at 8:03 pm
homeagain, exosurf, Brandy, Thank you all for your comments. I sure appreciate hearing all the different comments. It’s just amazing how different we all can be dealing with this disease. Brandy, I am so sorry for your loss. I know I don’t have a [I]bad[I] case of it and I sure hope the IVIg works for me. I have recently started so have a ways to go. God bless us all!
You must be logged in to reply to this topic.