My husband was diagnosed with CIDP in 2005 and about 2 years ago he started having, we call them spells. His temp. will get real low, it had gotten as low as 94.5 then he will have these chills that will last 20-30 minutes, then his temp. will spike. It has gotten up to 105 before. After he has these spells it seems his disease is much worse and he is in the bed for several days. He has increased pain and fatigue. We have told our GP but she didn't investigate. He hadn't had a spell for probably at least 8-10 months and last Wed. he had one. His temp. got down to 96.5 and only spiked to 101 but he's been down ever since. Is there anyone else out there who has a problem with fevers?
I don't necessarily have fevers, but I do get get bone jarring cold 'episodes', where I cannot seem to get warm. Too many clothes to get warm, weigh me down and makes the muscles even weaker. Standing on top of the wood stove and heating the room to an uncomfortable and unbearable temperature for the menopausal wife in my life, does not work either. The cold/freezing seems to start in the bones and makes the muscles cramp even harder.
I have had episodes where my blood pressure dropped real bad for 30-45 min. and my temp. increased alot and I sweated a puddle of sweat in the kithcen or bathroom floor. I have been diagnosed with cidp and dysautonomia, supposedly these two conditions are known to frequent each other. I am taking ivig for the cidp and for the dysautonomia I went to an electrocardiologist who put me on fludrocortisone .2 mg a day I think and mestinon 60 mg. a day. the fludro helps keep me from becomming dehydrated and the mestinon helps the nerves in the peripheral parts of the body do there job to return the blood to my heart.
I don't have either of your problems,however ,I have been under the care of a neurologist since I was diagnosed about 2 yrs ago, my GP is not involved at all. Maybe he needs the care of a neurologist.
I have had cidp for 2 1/2 years now. I dont have the dramatic swings in temp you are talking about but do experience occassional temps lasting from a few hours to a day or two. I havent treated them but am easily fatigued by them. I have been trying to pin point any stressors that preceed the episodes but havent found any consistancy. Keep looking for triggers they may minimize symptoms at least.
I have the same thing, although not the range that your husband experiences. Mine only last about 30 minutes, but I have to lie down. One set of doctors using QSART told me I can’t shiver nor sweet, thus the problems. I don’t know what to believe.
My guy has these episodes where he is unable to regulate his body temp. It starts with deep cold and has 2 electric blankets on his bed. One under the bottom sheet and one on top of the top sheet. He drinks hot water which he says warms him from the inside out. He also runs high temps after IG and takes Benedryl and extra strength Tylenol for the inflammation for 2 days following IG. Stress does initiate it as does getting over tired. He has an indicator and often can catch it because he has trouble speaking. It has improved and we are better at catching it…hot drink,meds and rest in bed. Hope this helps a bit. It is scary and he feels terrible.feel free to message me if I can help further. Hang in there BB.
CIDP can sometimes attack the autonomic nervous system, which controls things such as breathing, heart rate, and blood pressure that we don't normally consciously adjust.
A couple of years ago I have an event that started with chills, then went into a fever of 103. My blood pressure dropped, and my pulse spiked up as high as 150. I had pain in my abdomen, and over the course of a few hours got too weak to stand up. I was rushed to the hospital, where they thought I was having a heart attack, but tests showed that was not the case. Then, they thought I must have had an infection of some kind, but that was not the case either. After several days, my neurologist happened to stop by, and told me that it was my autonomic nervous system "going wild." He ordered IVIG, and in a few days I got better.
I didn't know what he meant by "autonomic nervous system going wild," but a year or so later I heard a talk by a different neurologist, and she described symptoms very similar to what I had, and the lightbulb went on.
I think this could potentially be very serious. When my heart rate was so high, I was not even allowed to stand up, because they were afraid I really would have a heart attack. If this happens again, I would check his other vital signs, like BP and heart rate. If those are also out of line, I would make sure he sees the neurologist.
My wife was diagnosed in July 2011 with CIDP. And from time to time she has "Cold Sweats". Low Blood Pressure id a normal thing for her, which is funny because she was once treated for high blood pressure. CIDP is a strange MONSTER, mimicking MS and even ALS ( Diaphragm issues).
My wife has built a tolerance to IVIG products, so at this time her Nero has stopped treatment and maintains with chronic Prednisone (40 mg/day) how ever the cold sweats continues from time to time. The funny thing is since stopping IVIG my wife is up and around walking without aid to kitchen etc ??????
If possible try looking into the stem cell study at Northwestern. They are having great results. However since it is still a study they will not take my wife due to diabetes
Cold feet! Peripheral nerve loss causes poor regulation of circulation - probably because the nerves can't keep proper track of the temperature - so if it is cold those bits at the end get really cool and suffer to the extent they eventually get that pain signal through. Heavy wool socks for day wear and a hot water bottle or microwave wheat pack at night is the answer for that.
My core temperature is so stable that I can predict within a few points what it will be at IVIg time.
Your problem really needs expert checking as it might be something quite unrelated.
I agree with Mammabear, I think the expertise of a neurologist is very important for this disease. My family doctor would not pay attention to my symptoms and I had to insist on a referral to a neurologist who after immediately ordering tests diagnosed my cidp and I began receiving IVIG. I get the chills when I get the infusion, but now that I leave it at room temp. for several hours prior to the infusion the chills have decreased. Has your husband lost a lot of weight and are the sweats drenching him to where he needs to change cloths, has there been recent blood work done? He might consider seeing a hematologist/oncologist if his blood work is abnormal. Good luck hopefully you have found some useful suggestions. Peace Nancy
It's common to have bladder issues when you have CIDP. If the bladder could not release all the urine, the remaining fluid will be stagnant and could lead to UTI. Chills are very common if UTI if not treated early. Have your urologist check your urine culture to determine the right anti-biotic . If the color of the urine turns dark (like dark orange to brown) your kidney might already be affected. I know cause I've been in the same situation.
It's common to have bladder issues when you have CIDP. If the bladder could not release all the urine, the remaining fluid will be stagnant and could lead to UTI. Chills are very common if UTI if not treated early. Have your urologist check your urine culture to determine the right anti-biotic . If the color of the urine turns dark (like dark orange to brown) your kidney might already be affected. I know cause I've been in the same situation.
Thank you to everyone who has replied. We are going to see his neuro. on the 20th of this month and we will talk to him about this. We live in North Carolina and he had mentioned several months ago about sending him to Duke hospital to be checked out for Lupus b/c according to his(the neuro.'s) test he tested positive 2x for Lupus, sent him to a rhumatologist sorry if I didn't spell that right, anyway that doctor took some blood and said he didn't have Lupus. We went to our GP and she said he did have the antibodies for Lupus and was border line Lupus. Maybe this has something to do with the fever and chills as well. We are so frustrated. Swelling of the feet and legs is why they checked his blood to begin with because his neuro. said that CIDP does not cause your legs and feet to swell and he said since he already had CIDP it was common to get another autoimmune disease. My husband cannot take the IVIG because of the side effects nor can he take any of the medication like neurontin, lyrica, keppra, or steroids. The only thing he is able to tolerate is narcotics which in themselves lie a lot of problems. They did put a spinal cord stimulator in his back to help with his back pain and it has done wonders for that, but it doesn't help with his leg and feet pain. He has it all pain, fatigue, and muscle weakness. The neurontin worked the best. He got up to 4000mg. of that but he couldn't tolerate the sickness it caused. He threw up a lot and was so swimmy headed he could hardly walk so the doc. took him off of it. We just have to take it a day at a time and just try to pray and trust God as I'm sure everyone else does.
lucy said:
ultimax said:
It's common to have bladder issues when you have CIDP. If the bladder could not release all the urine, the remaining fluid will be stagnant and could lead to UTI. Chills are very common if UTI if not treated early. Have your urologist check your urine culture to determine the right anti-biotic . If the color of the urine turns dark (like dark orange to brown) your kidney might already be affected. I know cause I've been in the same situation.
I definitely get chills and fever after my treatments with IVIG but at no other time. This lasts a few hours and goes away and the next day it is as if nothing has happened. I just climb into bed for these short periods and take some paracetamol to lower the fever and that is that. My temperature is (for the other 50 days between treatments) very stable and low.
Hi Lucy, sorry to hear that your hubby has this insane disease!I have had CIDP since 2007 and yes my body temp goes haywire....its not that it lasts for days when it spikes but I can have a hot spell that lasts for up tp 30 minutes and then freeze right after...the weather plays havac with our bodies too.
I don't get a fever but I have to an extra shirt on my couch. I go from sweating to freezing. I need a short sleeve and then I get so cold I have to put on a sweatshirt. Back and forth within ten minutes apart. My husband laughs at me. I have trouble sleeping to. I freeze and then I'm sweating. Covers on , covers off!
I have had CIDP for 2 1/2 years. Currently on IVIG every 21 days. I get spikes in my temperature and sweating all day and night off and on without any warning. I thought maybe I was having hot flashes because I am in my late 40s. But now I think maybe it is related to my CIDP. The hot feeling started right after being diagnosed. I will never know for sure but I think the stress of CIDP threw me into early menopause or maybe I am not in menopause but just having temp spikes due to the disease itself.