Please share what your CIDP symptoms feel like on a daily basis or certainly during a flare

General General CIDP Discussion
1

I'm hoping each of us might take a quick minute to describe what our CIDP feels like for us so that we might be able to open up a dialog and connect with others here, as well as potentially find some support from one another in knowing that there is someone else out there that is experiencing the similar scary sensation in the leg etc. Just a thought.

Here's my latest: I was diagnosed in November 2010 with very mild neuropathy and was super fortunate to start IVIG therapy immediately and responded positively. However, due to a sequence of events and debacles(a.k.a. aseptic meningitis, shingle-post herpetic neuralgia etc ;) by August 2011 was experiencing significant areflexia, transient stocking and glove neuropathy which led to tripping while I was still fighting to hold on to my job as a pharmaceutical sales rep selling chronic pain meds(ironic right?) My fingers proceeded to increase in numbness, my feet went from no longer feeling just neuropathy, since then they feel like they are being crushed between concrete blocks, and between those blocks are hundreds of pieces of broken glass that are constantly vibrating with the strong current of an industrial saw. They are forever freezing to the touch, but if I am on them for literally 5 minutes too long the burn up and blow up like a Macy's Thanksgiving Parade float.

SO I've been told I have a vivid imagination because of my description of my symptoms sometimes, but I honestly tell people that if they were trapped in our bodies for just one 24 hour period the pain is beyond intense and unrelenting that you kind of can't help but see it such a distinctive way. I don't know, maybe it's just me....

Thanks so much for taking some time to share and I wish you all the very best.

Take care,

Tara Yaz :)

2

Hi. I had weakness of my arms & legs about 12 years ago.i could barely walk & couldn’t raise my arms. No pain. It was about a month onset. Thankfully I was diagnosed quickly & was put on IVIG. I reacted great to the IVIG until about 9 months ago. Now I get the neropathy in my fingers & hands & feet & get really weak. Ended up in paralysis a couple of months ago. Still no pain. My relapses got closer & closer & the IVIG was not working anymore. They started to do plasma pharesis on me. It worked great! Unfortunately it only lasts for 2 weeks. (IVIG lasted 3 months) I am relapsing again so they are going to do the plasma pharesis on me then give me 4 rounds if Rituxan. Crossing my fingers that his will work! Thanks for listening!
Heather

3

I have numbness in both my hands and feet. My balance is way off especially when I take small steps or are standing still. I have been getting IVIG for years, maybe 5 now, I wouldn't be able to function without it. I wouldn't even be able to write with a pen, buttons, walking without falling into the wall. When I have a "relapse" I have been given Rituxan every 1 1/2 - 2 years and this stabilizes me and I am able to function very well, while continuing IVIG. It has been 26 months since my last Rituxan treatment. I've been taking an anti-inflamatory protocol and fingers crossed it seems to be working. I have some pain in my feet but it's not unbearable.

Looking forward to others responses.

4

I presented with right drop foot, pain and numbness in my right foot and lower leg and slurred speech. I was tested for everything. All my tests came back normal. That was 7/2012. Finally on 8/28/2013 I was diagnosed with CIDP. By then both feet and legs are numb, I have neuropathy in them and my chest wall and continued slurred speech. My hands are starting to go, especially the right. I started IVIG 10/4. I got phlebitis. Got it again on my 4th treatment. So we are now going to have a port put in on Nov 15. But my average day consists of pain, feet, legs, chest, back hands, arms. I bear it as long as I can before turning to vicoden. My flare days are horrendous. I HURT from head to toe. Nothing will stop it. My feet feel like they are being crushed so does my chest and back. It's hard for me to breathe. I can't hardly walk or talk. I have this feeling that something isn't right. I know something is going on in my body. And the fatigue is unbearable. This can last from 2-3 days to 2 weeks. I take 3600mg of gabapentin a day and 12 mg of tizainadine. And 500/5 vicoden as needed for pain. I'm going to ask to be referred to a pain specialist for help with the pain. Do others have this unbearable pain? Is it common?

5

Jordan,

I truly feel your pain, your words resonate with me on so many levels. First of all, the fact that you are getting a port put in will be one of the best things you can do for yourself. I was hesitant initially, but I ran into so many issues after complications from a year of IVIG infusions plus comorbid Angioedema, my veins had so much scar tissue & would blow that we would end up visiting the ER 3-4 times every infusion to get a new line put in after my nurses would try 5-6times at home. Once I got to be on a first name basis with all of the triage nurses at the ER I agreed the port was probably a good idea. And was it! Not only is the whole process of getting started quicker, you have freedom of both of your arms :) AND personally I've found that if I make sure I continue to prep with my fluids prior to, and drink my Gatorade during as well as get up and move, even if it is just walking back and forth a few times in the hallway but if I can walk outside for 5 minutes two or three times even better, I have found that my hellish migraines have not only subsided, but I have not had to administer my rescue migraine injections for these last two infusions at all. Just a thought. As for the pain, I would absolutely see a pain specialist. I made it a point to build a "team" of specialists to help me function as full a life as possible and because of my career I was fortunate to have existing relationships with several amazing top doctors in D.C. that have been amazing resources as well as champions in helping me continue to fight to hold on my independence. I unfortunately lost my job due to my illness about two years ago and am close to having my gosh darn social security disability hearing so I can finally feel like all this stress I've put into this fight will be able to be focus back on my health. But that being said, my goal is to ultimately be a resource for patients that are going through any and all of our stuff, because I've worn many different hats, so to speak, during my career and journey and I would be more than happy to share any helpful information or be an ear to listen so feel free. Good luck and be well.

6

I take the anti-depressant, Cymbalta and it helps with the nerve pain.

7

I started off with tingling in my toes that I thought was related to an exercise regimen that I had started (pretty intense P90X). I bought new shoes, did more back stretches, etc. thinking it was probably muscular. Then the sensations started moving up my foot, into my lower legs then into my knees. My family doc referred me to a neuro, and he diagnosed me, at first, with Guillain-Barre'. He prescribed one round of IVIG and then reassessed. When he found that my symptoms had progressed into severe weakness and loss of some deep tendon reflexes, he diagnosed me with CIDP. I am now going in for bi-weekly IVIG. If it gets to where I have to go every week, I may ask about a port...this stuff is hard on the ol' veins.

8

Hi All,

Your description of your numbness with the pain is spot on. I have tried IVIG, prednisone and immune suppressants with no luck. My Neurologist suggested I go to a pain clinic which was a turning point for me. I went from a pain level of 8 to liveable 3, admittedly I was swallowing so many pills I did not need breakfast but they worked and I have now been weaned off most of them. I now only take Lyrica, Cymbalta and Trepyline at night which are my little yellow wonders for sleeping. Even more than the pain it is the mind numbing exhaustion that gets me down but as the saying goes "it could be worse" and the next person who says that to me will find themselves being beaten about the head with the first object I find.

I hope for a pain free day for all.

9

I have had IVIG in the past and it gave me aseptic meningitis headaches. Recently had plasmapheresis in hospital for a 9 day stay. Came out feeling great, but symptoms returned within about 6 weeks. Going back in in a couple of weeks to do another round while continuing to take prednisone, imuran, etc. Prednison makes me want to eat everything in site and I have gained about 12lbs. I am currently experiencing extreme weakness in arms, hands, legs, etc. I am exhausted all of the time, little sleep, etc. I don't currently have much in terms of tingling or numbness, but I have been on Gabapentin for a while so I think this keeps it under control. But when I started having symptoms, I did have numbness in my fingers and tingling in my legs, feet, and face. I was diagnosed in May of 2012 and am still trying to figure out what works best for me. This disease is a bear, but I truly believe in my doctor and hope to get on a regular treatment plan that works very soon. I don't care what it is, as long as it works and we know what will work. For now, only my faith and family is getting me through. I am continuing to work, but it is getting more and more difficult. I will keep on keeping on!!

10

Looking back on my journey with CIDP and listening to your experiences have been soooo helpful. My symptoms started about two and a half years ago. I worked in Manhattan and kept falling at unexpected times. Because I was pretty driven about work, I would have someone help me up (not easy to do in NYC) and proceed to appointments. Then it got to the point that I could not walk from point A to point B without being able to touch something solid as a point of reference. Make sense? I thought my symptoms were due to back surgery since they started soon after the operation but this was not the case. My balance got so bad that I could not even walk up or down a curb - broke my ankle, fractured sacrum and fractured ribs all in separate incidents. These kept me laid up for several months. I no longer drive because I cannot feel the pressure on the gas pedal and was not able to take public transportation because of balance issues. Have started to now take buses, trains and subways - a huge deal when you live in NYC. Started IVIG and physical therapy a little over a year ago and the combination is working. Balance is much better and muscle strength and endurance is quite improved. I am very religious about both IVIG and the exercising. My physical therapist is constantly challenging me with ever increasing levels of balance exercises.

I'm hoping the combination keeps working. Do feel the effects of the IVIG wearing off a couple of days before next infusion is scheduled. Have great confidence in my neurologist and try not to listen to a lot of horror stories. They just depress me. Instead, I follow the neurologist's advice completely.

11

My symptoms started almost a year ago. I started having extreme pain in my lower back, hips, buttocks, and thighs and then later on into my pelvic area. I'm learning not to be embarrassed because for about the last 3 months I started having problems controlling my bowels and bladder. Mostly my bladder.

I was sent to an orthopedist because it was thought that I had bursitis, so I had steroid shots into the hips. I had an MRI and it didn't show any problems in my lower back. So while I waited to see what would happen next, I had acupuncture and after 4 treatments that stopped because it seemed to irritate my nerves more. Then I was sent to a physiatrist and he gave me epidural steroid shots because I had a CAT scan and he thought he saw something maybe in my lower spine. When that had no effect at all he sent me to a neurosurgeon that just dismissed me and told me to go back to my neurologist and try some stronger pain medication.

My neurologist has been really good and didn't want to give up on figuring out what this was and just leaving it at nerve pain or what the neurologist said was extreme chronic pain. He was doing just some usual test and noticed that I was extremely week. He also noticed that I as very thin. I told him I was having weird cramps where my fingers bent in and I would also get them in my feet.

So something told him that I needed to have a nerve conduction test. Maybe he had an idea that I had the disease. I'm not sure. He went ahead and put me on a pain patch along with my current pain medication to help me through the extreme pain I was having. I had a nerve conduction test when I first found him as my neurologist in 2006 and I think that is how he found my spinal cord injury. But this never conduction test came back with much different results. He explained them and how they showed extreme weakness.

Anyway the doctor that gave me the test told me I needed a spinal tap immediately then he called my neurologist and I could just hear him talking to him as if it was urgent. Then he told me about CIDP but just how it was effecting my body and not what it was. So I got the name of it and went back to my hotel and looked it up. I could tell by the symptoms that finally all my symptoms fit what this was. But I still decided to wait till my neurologist confirmed it to me.

I'm still waiting on the spinal tap but was told I'd have the spinal tap and then start IVIG fusion treatments. He explained the disease.

Right now I'm waiting still to have the spinal tap. The pain seems a little better and I haven't figured out why. I still fell it in my legs and my fingers will cramp up. I use a tens unit some and it helps a bit. What is new is I'm feeling more exhausted and more confused. I have trouble thinking. I could still be in the pain and this could be causing some of these problems and I'm just not feeling it because I"m just wanting to go to sleep all the time.

I'm not sure if this was for people that are already having treatments or not but since I'm on no treatment at all I thought if anyone is studying this maybe it could help. I hear about some of the stuff I'm going through but it seems after they go through these ifig fusion treatments. So I'm wondering if exhaustion and confusion is also common before.?

I think being positive though will help so I will stay positive and take it a day at a time!

12

I hear where you're coming from, Jon! I have gained 8 lbs since being on the prednisone, and I also get very little sleep. Working is a real chore, which I hate because I truly love my job. Do you still drive? My driving is hit and miss, depending on how I'm feeling.

Jon said:

I have had IVIG in the past and it gave me aseptic meningitis headaches. Recently had plasmapheresis in hospital for a 9 day stay. Came out feeling great, but symptoms returned within about 6 weeks. Going back in in a couple of weeks to do another round while continuing to take prednisone, imuran, etc. Prednison makes me want to eat everything in site and I have gained about 12lbs. I am currently experiencing extreme weakness in arms, hands, legs, etc. I am exhausted all of the time, little sleep, etc. I don't currently have much in terms of tingling or numbness, but I have been on Gabapentin for a while so I think this keeps it under control. But when I started having symptoms, I did have numbness in my fingers and tingling in my legs, feet, and face. I was diagnosed in May of 2012 and am still trying to figure out what works best for me. This disease is a bear, but I truly believe in my doctor and hope to get on a regular treatment plan that works very soon. I don't care what it is, as long as it works and we know what will work. For now, only my faith and family is getting me through. I am continuing to work, but it is getting more and more difficult. I will keep on keeping on!!

13

Just got done with another round of plasmapherisis and feel really good. Yes, before I went in I was still driving, but my wife did not trust me. :-) Like I said, doing much better now. Hope it lasts longer this time. Still on the meds, but doc said if it comes back like last time, may be doing either routine bi-weekly pheresis or possibly sub q. Not sure. Trying to diet to keep weight down for now. Hope we can find what is going to work the best for the longest periods.

14

In 2005 it started. I told my primary doctor what was happening. She performed a neuro-exam which was normal by her standards. I've been to the ER numerous times with numbness, tingling, headaches, extreme fatigue and unsteady gate. After head CTs and Brain MRIs, neuro checks, and routine blood work, the intern has the nerve to say perhaps it is the 'flu' or stress. In 2008 was the worst I've ever felt. Started with the same symptoms and nausea/vomiting, migraine headache, extreme fatigue and poor stability. After days of being in bed, I got up to go to the restroom and my legs gave out. I stumbled and hit my head on the toilet. I could not get up my legs would not work. I called for my daughter(teenager asleep in the next room). Freaked her out. Later that day my husband took me to ER. It was nighttime and I had to wear sunglasses because of the glare from other headlight. Anyway, after lots of tests the on-call neuro doctors could not find anything wrong. They treated the migraine with Mso4 (morphine, what a great drug) and sent me home with a referral for a neurologist.

Life changing new neurologist in Raleigh. Yes a God-send. MRI, blood work, lumbar puncture for cerebral spinal fluid, and an EMG. Behold you have CIDP. What is that? He diagnosed, explained the disease, and provided treatment options with empathy, compassion and optimism. I started on plasmapheresis, 60mg prednisone for about a year. Decreased prednisone to 40mg per day and IVIG on an outpatient bases in Durham. The next year decreased to 30mg per day and had treatments in Raleigh's outpatient services. It was so nice. I had a bad reaction to an IVIG drug (meningitis). In hospital for 5 days. Oh it was bad. Not the meningitis but other things. One nurse gave me IV potassium without a saline piggyback and it burned up my veins. Talk about painful. So since my veins are shot I had to get a central line placed. Not too bad except for the sound it makes when the nurse is snaking a catheter thru my arm via ultrasound and I'm watching it on the monitor. I'm hearing the catheter pop thru the fatty tissue in my arm. Meanwhile my husband is sitting in the chair worried. I'm telling him it's not bad...I'm ok. Then the nurse said she messed up and had to get a new kit and start over. Other mishaps occurred that year but too much to mention.

Long story I know, but needless to say, I currently have my IVIG treatments at home. With a port in my chest, 5hrs a day for treatment. 5 day straight every 8 weeks. I take Imuran 200mg daily, prednisone 5mg daily (soon to be d/c'ed), gammagard iv. I just started neurontin yesterday (which makes me feel high) so I don't know if it is worth taking and deal with the pain.

I thank my doctor for taking the time to listen to me and follow his training. Lol after he diagnosed me, he said he thought it was in my head too had it not been for the tests he performed. Because, my neuro exams were all intact and working properly. The only thing he could see with his eyes, I was extremely exhausted with no fever. Every symptom was subjective at that point.

I pray this give someone hope and to never give up in proving your sick. CIDP is very rare, (especially for an African American women) and is very difficult to diagnose if a doctor is not familiar with the disease.

Missy

15

Hi Jordan great input. You mentioned disability. I filled two years ago for the first time and was denied. Now with an attorney and all the paperwork in place, I too am waiting on a hearing date. It is amazing to me that CIDP is not a common disease according to SSDI. I don't understand why the physicians working with this office is not aware of this disease. I would think they would do their research before they deny people suffering with CIDP. I'm sure it is not cost-effective on SSDI's budget when they deny folk and have to attend hearings. Not have funds to support my family is very difficult. I'm sure in your case it is difficult too.

Anyway, thanks for sharing

Missy

Tara Yazinski said:

Jordan,

I truly feel your pain, your words resonate with me on so many levels. First of all, the fact that you are getting a port put in will be one of the best things you can do for yourself. I was hesitant initially, but I ran into so many issues after complications from a year of IVIG infusions plus comorbid Angioedema, my veins had so much scar tissue & would blow that we would end up visiting the ER 3-4 times every infusion to get a new line put in after my nurses would try 5-6times at home. Once I got to be on a first name basis with all of the triage nurses at the ER I agreed the port was probably a good idea. And was it! Not only is the whole process of getting started quicker, you have freedom of both of your arms :) AND personally I've found that if I make sure I continue to prep with my fluids prior to, and drink my Gatorade during as well as get up and move, even if it is just walking back and forth a few times in the hallway but if I can walk outside for 5 minutes two or three times even better, I have found that my hellish migraines have not only subsided, but I have not had to administer my rescue migraine injections for these last two infusions at all. Just a thought. As for the pain, I would absolutely see a pain specialist. I made it a point to build a "team" of specialists to help me function as full a life as possible and because of my career I was fortunate to have existing relationships with several amazing top doctors in D.C. that have been amazing resources as well as champions in helping me continue to fight to hold on my independence. I unfortunately lost my job due to my illness about two years ago and am close to having my gosh darn social security disability hearing so I can finally feel like all this stress I've put into this fight will be able to be focus back on my health. But that being said, my goal is to ultimately be a resource for patients that are going through any and all of our stuff, because I've worn many different hats, so to speak, during my career and journey and I would be more than happy to share any helpful information or be an ear to listen so feel free. Good luck and be well.

16

My daily CIDP symptoms. I'll just post them as I think of them and not necessarily in order of difficulty. That being said, PAIN is the worse part of this for me.

The skin on my lower legs from about midcalf down is numb. Kind of like I am wearing a very shear sock all the time no matter what I take or do, 24/7. I can feel some pressure and some temperature.

My toes feel like they are plugged into an electrical outlet that applies a shock to each toe starting from the little one in to the big toe completely at random about three or four times a minute. This "electrical" sensation is very annoying to say the least!

The electrical shock also will travel up thru my feet to just past my ankles and this is sometimes related to but not always related to the "shock" I get to my toes.

All my toes feel like I have open cuts in between my toes. I don't have those wounds, I just looked again, none there. I'm sitting barefoot right now on the couch and I have no open wounds on my feet but it feels like it if I move or walk.

On top of that my toes feel like they are in a vise being squeezed with increasing pressure.

That big tendon that goes from my heal to my big toe feels all the time like it is shrinking? It feels like they are pulling on my big toes to the point where I am constantly stretching my big toes in an attempt to stop or relieve the feeling.

Over the last 4 or 5 years my feet have started to "roll over" to the inside when I walk. I'm told it's because my arches are collapsing due to "muscle" control from the neuropathy. I'm told it's a circle, loosing nerves = pain = walking incorrectly = using muscles incorrectly = pain = walking incorrectly etc. The inside of my ankles really hurts when I walk.

My feet are slowly rotating around to the outside. That is to say my toes are not pointing straight ahead but slowly rotating around to the outside.

Also when I walk it feels like I'm walking barefoot on sharp rocks all the time, every step I take. This makes me walk very carefully and not very naturally. Walking this way is now making my knees and hips hurt a lot when I walk.

When I'm lying in bed at night and not moving I can feel the tingling sensation now up past my knees on the inside and towards the back of my legs almost all the way up. Also muscle "twitches" that feel like I have strings inside my legs that are being picked like a guitar string. This is totally at random and mostly from the knees down.

So that's pretty much all my symptoms. I may have missed one or two and hope I have explained the ones I've mentioned well enough. I've kind of bared my soul here and do not usually confide so much openly online. Also, I now have a PICC in my right arm and have three more IVIg infusions to complete before I am evaluated again by Neuro doc to see if I am to continue or stop or change therapies. I have struggled a bit with the IVIg. I keep getting headaches and have barely make it thru each of the four day processes.

Now what do I take for all this aside from the IVIg treatment? Well the original question is in regard to symptoms so what I take and what side affects I get from those is I suspect for a different post. I just read over my post here......I hope I don't bore the reader to the point of not getting thru it all.

I do appreciate this forum.

17

I've experienced many of the symptoms you describe. I swim everyday if I can. I also go to physical therapy. ALL (or most, lol) of what you described can be remedied with focused exercise or physical therapy... WHY? Because CIDP is a neuro-muscular disease.

I have explore nearly every nerve and muscle of the human body, in textbooks and on line, and concluded that it is up to the individual with CIDP to take charge and force the muscles (gently) to work again. Believe me, a good physical therapist can do wonders in a very short time.

I enjoyed reading your post as you used similes and metaphor to your advantage and mine. Thanks.

If you can walk, you can make it to a swimming pool. Just do it! LOL

jakeyspaw said:

My daily CIDP symptoms. I'll just post them as I think of them and not necessarily in order of difficulty. That being said, PAIN is the worse part of this for me.

The skin on my lower legs from about midcalf down is numb. Kind of like I am wearing a very shear sock all the time no matter what I take or do, 24/7. I can feel some pressure and some temperature.

My toes feel like they are plugged into an electrical outlet that applies a shock to each toe starting from the little one in to the big toe completely at random about three or four times a minute. This "electrical" sensation is very annoying to say the least!

The electrical shock also will travel up thru my feet to just past my ankles and this is sometimes related to but not always related to the "shock" I get to my toes.

All my toes feel like I have open cuts in between my toes. I don't have those wounds, I just looked again, none there. I'm sitting barefoot right now on the couch and I have no open wounds on my feet but it feels like it if I move or walk.

On top of that my toes feel like they are in a vise being squeezed with increasing pressure.

That big tendon that goes from my heal to my big toe feels all the time like it is shrinking? It feels like they are pulling on my big toes to the point where I am constantly stretching my big toes in an attempt to stop or relieve the feeling.

Over the last 4 or 5 years my feet have started to "roll over" to the inside when I walk. I'm told it's because my arches are collapsing due to "muscle" control from the neuropathy. I'm told it's a circle, loosing nerves = pain = walking incorrectly = using muscles incorrectly = pain = walking incorrectly etc. The inside of my ankles really hurts when I walk.

My feet are slowly rotating around to the outside. That is to say my toes are not pointing straight ahead but slowly rotating around to the outside.

Also when I walk it feels like I'm walking barefoot on sharp rocks all the time, every step I take. This makes me walk very carefully and not very naturally. Walking this way is now making my knees and hips hurt a lot when I walk.

When I'm lying in bed at night and not moving I can feel the tingling sensation now up past my knees on the inside and towards the back of my legs almost all the way up. Also muscle "twitches" that feel like I have strings inside my legs that are being picked like a guitar string. This is totally at random and mostly from the knees down.

So that's pretty much all my symptoms. I may have missed one or two and hope I have explained the ones I've mentioned well enough. I've kind of bared my soul here and do not usually confide so much openly online. Also, I now have a PICC in my right arm and have three more IVIg infusions to complete before I am evaluated again by Neuro doc to see if I am to continue or stop or change therapies. I have struggled a bit with the IVIg. I keep getting headaches and have barely make it thru each of the four day processes.

Now what do I take for all this aside from the IVIg treatment? Well the original question is in regard to symptoms so what I take and what side affects I get from those is I suspect for a different post. I just read over my post here......I hope I don't bore the reader to the point of not getting thru it all.

I do appreciate this forum.

18

Diagnosed in Decmber Trunk pain (constant) numbness, right foot drop, burning in right quad on down. Some numbness in left foot. Nothing in hands or arms. My problem is I don’t know where I am in this disease. Early, late, middle. Physical therapy and IVIG in the last two weeks - no response as yet. Use a walker for drop foot.

19

Hang in with ivig. Took me about 6 months to get great improvement. Probably had it for a long time(two years?).

20

Have any pain medicine recommendations. IVIG now is not working and even seems to be making me worse as each time I now take it my symptoms seem toget worse. Have been taking IVIG g now for over two years I wonder if any one has gone off without getting worse. Looked u under peripheral neuropathy foundation seems to be a cat agony of simply periphrastic neuropathy of unknown cause.