Hi Iam Ronnie, AKA Knott,I have had CIDP for about 3years now and the IVIG has not worked for me. I have been trying to live and work as a auto tech with this stuff the best that I can. Does heat effect anyones weakness level? If I take a hot shower or in a hottub it feels great but once I get out Iam very weak and the hotter the days the worse I feel.
YES! I cannot function when it gets above 75! Right now I have my AC on. I have had CIDP for 24 yrs and have had the worse 2 summers ever! I am a homecare nurse so I'm in and out of peoples houses and apts all day long. I have gotten overheated and dehydrated often. My trick is to carry a cooler with bottled sports drinks like Powerade or Gatorade and drink. You will need about a gallon extra of fluid in hot weather.
My guy is completely opposite he has chills, shivers then sweats huge amounts. I wonder if you just have a hard time regulating body core temperature…thoughts?
Yes I have had chills,nite sweats but only has been at nite. and some times hot flash's.
Madonnart said:
My guy is completely opposite he has chills, shivers then sweats huge amounts. I wonder if you just have a hard time regulating body core temperature......thoughts?
I'm rather new to this, so I cannot really say much. My issues became forefront to me in November but were not diagnosed til February. I've not been able to work since December 3rd, so my life is in much turmoil at the moment. Having to talk to bill collectors and councilors and Drs and trying to keep what's left of my life in tact is taking it's toll on me. I still love my hot showers and after a stress filled / crying day... a hot shower relaxes me. Warmer weather is upon us... eventually I hope. Will have to wait and see what that will bring. I am happy for you that you are still able to work. I am a Rehab/CNA and I have to be steady on my feet and able to walk myself. I have balance issues, both my legs are numb and I fall or almost fall daily. So I am not able to make my own money right now. I have a positive attitude most days and I keep the faith. As yet, still not getting any treatments or infusions. Have had extensive testing done, waiting on blood work results and the results from the spinal tap. Stay in touch... the more information we can share the better. Maybe we can help another by sharing stories. ~ Blessed Be.
Sis, I have taking the spinel tap about 2 years ago.I have been taking 3 prednisone 10mg a day,and oxycodone 5-325 3-5 times a day.they both help alot but being a auto tech with cidp and taking oxycodone dont mix very well.I have been back at work for about 2yrs.Ive made a few mistakes in my job,some are unsafe and not sure why they are keeping me around.When most other dealers would have let me go.So I have been tring to prepare myself for jobloss or disability.Dont want nether to young to be sitting at home.
Sis said:
I’m rather new to this, so I cannot really say much. My issues became forefront to me in November but were not diagnosed til February. I’ve not been able to work since December 3rd, so my life is in much turmoil at the moment. Having to talk to bill collectors and councilors and Drs and trying to keep what’s left of my life in tact is taking it’s toll on me. I still love my hot showers and after a stress filled / crying day… a hot shower relaxes me. Warmer weather is upon us… eventually I hope. Will have to wait and see what that will bring. I am happy for you that you are still able to work. I am a Rehab/CNA and I have to be steady on my feet and able to walk myself. I have balance issues, both my legs are numb and I fall or almost fall daily. So I am not able to make my own money right now. I have a positive attitude most days and I keep the faith. As yet, still not getting any treatments or infusions. Have had extensive testing done, waiting on blood work results and the results from the spinal tap. Stay in touch… the more information we can share the better. Maybe we can help another by sharing stories. ~ Blessed Be.
Knott, What is the odds of 2 auto technicians afflicted with the same rare problem? When I'm in the heat my skin itches a lot. I put oil on regularly. I did have an allergic reaction to the immuno globulin which has been controlled. The itching is a result of that. As far as work goes, my hands have weakened considerably, especially the web between the thumbs and forefingers. It's hard to start fasteners. I loved my industry after years of Ford Racing Team, shop ownership and street rod work. I'm now retired (at 71) but I have a shop at home to play in. I can work about 5 hrs a day, so I consider life is good. I have made stellar improvement after the IVIG infusions which I have been on for 8 months now. I go to Albuquerque for them every 3 weeks. I no longer need the use of a cane, feeling is better, balance is better as well as stamina. My wife cries when I dance with her as I couldn't before. The root cause (auto lingo) of my affliction was high doses of chlesterol drugs over a period of time, which I am off of. I'll find out what my lipids are next week after my new diet and red palm oil. Best wishes my friend and don't give up. Auto repair is a brother hood so don't give up on your service manager. Stay in touch with him.
I am in total awe of you who are still able to work in the professions you so enjoy. At this point, I'm not sure what I will be able to do to earn money. I've been a CNA for about 31 years and I don't really know what else to do, it's just always been there. I do also love photography, but at this point, that too is iffy with my hands shaky and my balance is off so I need a cane when I go outside. Reading your stories gives me hope. :) Thanks for sharing. ~ Sis
Sis, CNA as in insurance or CNA as in home care? Either case, I believe if you have the enthiasum for your industry, you could work from home as a consultant or provide a service to help others. Contact agencies to see if they may have work you could do for them from home. Be creative in your mind and find a nich you fit into. Do whatever work you can keep up with but do something. Dormacy is a killer, stay active. Find a new interest. I was in a bind once and learned how to sell on eBay, then started selling for busy people that didn't have the time for which I charged a listing fee and got commission on the sale. Word spread and I kept pretty busy. Make things yourself and sell them on eBay. Search eBay listings to see what interests you. Go to garage sales and buy and resell. Go to craftshows to get ideas. Let these sparks grow. There is something out there that will be a good fit for you.
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Sis said:
I am in total awe of you who are still able to work in the professions you so enjoy. At this point, I'm not sure what I will be able to do to earn money. I've been a CNA for about 31 years and I don't really know what else to do, it's just always been there. I do also love photography, but at this point, that too is iffy with my hands shaky and my balance is off so I need a cane when I go outside. Reading your stories gives me hope. :) Thanks for sharing. ~ Sis
Skiptech, I also hvae the problems you have with the weakness in my hands. Trying to start a fastener is lot more harder than it used to be. I have been a auto tech most of my life. The last 13 has been at a Dodge dealership. About 5years ago I damaged my right shoulder and had 3 surgeries and out of work for about 2.5 years. But about 3 or so years agois when I was diag with CIDP been back to work for just over 2yrs and has been hard. Thanks for your info and support.
Skiptech said:
Knott, What is the odds of 2 auto technicians afflicted with the same rare problem? When I'm in the heat my skin itches a lot. I put oil on regularly. I did have an allergic reaction to the immuno globulin which has been controlled. The itching is a result of that. As far as work goes, my hands have weakened considerably, especially the web between the thumbs and forefingers. It's hard to start fasteners. I loved my industry after years of Ford Racing Team, shop ownership and street rod work. I'm now retired (at 71) but I have a shop at home to play in. I can work about 5 hrs a day, so I consider life is good. I have made stellar improvement after the IVIG infusions which I have been on for 8 months now. I go to Albuquerque for them every 3 weeks. I no longer need the use of a cane, feeling is better, balance is better as well as stamina. My wife cries when I dance with her as I couldn't before. The root cause (auto lingo) of my affliction was high doses of chlesterol drugs over a period of time, which I am off of. I'll find out what my lipids are next week after my new diet and red palm oil. Best wishes my friend and don't give up. Auto repair is a brother hood so don't give up on your service manager. Stay in touch with him.
YES! I avoid the heat whenever possible. It is particulary worse when it is both hot and humid, whether it be outside or inside. I used to love saunas, but would now have to crawl out of one (at best) if I went in. I force myself into a warm hot tub (not over 101 degrees) because it helps my muscles and flexibility, both of which are significantly impaired. Even going down to the mailbox or rolling the trash can down to the street on hot/humid days makes me severely fatigued, dizzy, tremulous, and puts me in bed. It is not uncommon with CIDP.