October 30, 2020 at 7:33 pm #117772MikeParticipant
I was wondering how people deal with, and handle the day to day if not minute to minute fluctuations of this disease? My symptoms seem to come in waves of burning, tingling, coldness, and weakness. I also have autonomic involvement, my legs get weak, and vision blurry? Any tips how people help handle these fluctuations? Any way to help get the fluctuations on a schedule? Thanks
October 30, 2020 at 10:36 pm #117773AusvoltzParticipant
Sorry to hear you are going through this, it can be tough at times.
I have all the same symptoms and have yet to find anything that helps.
October 31, 2020 at 8:33 pm #117774Walter KParticipant
See below a list of things that help me sometimes and also what causes things to flair up and make it worse.
Don’t forget everybody is different and the disease changes all the time.
I find relief from:
– going to the beach and cooling down in the salt water for 10 – 20 minutes. This provides me with the longest lasting improvement up to several days. I try to do it as often as I can.
– getting enough sleep
– stop watching TV or reduce as much as much as possible.
– use Chinese herb oil when the pain gets too strong. Gently apply, do not rub too much.
– Use Prednisone 40mg or more to settle down inflammation. In my case it does not completely stop the progression of the disease though.
– cold showers up to 20 min.
– Protein supplements and Curcuminoids 600mg or the strongest possible with piper nigrum
Things to avoid:
– Massage. I find this really sets off my whole nervous system and causes pain and irritation throughout the body even when I a get a light foot rub.
– Too much exercise. This is a difficult one. We need to to as much as we can to maintain health and muscle strength but every bit over the limit is causing the opposite for me. I started exercising a few months after my diagnosis 2 years ago and it seems it set off the disease to come on with a vengeance.
– Carbohydrate foods. I feel an instant increase in symptoms within minutes of a high carb meal or sugary food to the extend that after 30 min I can hardly walk while I was walking ok(-ish) before.
Both lists may be incomplete and subject to change. They may work for me but not for everybody.
I also read your post here https://forum.gbs-cidp.org/forums/topic/new-to-cidp-i-think-2/ and I see many relations between what you describe and my own experiences, including the unusual instant sudden onset. I believe that only a few here can fully rely on their initial diagnosis.
It would be great to continue to hear how you are going.
It would also be great to have a register of experiences, symptoms and remedies accessible in one place for others to look up. Perhaps one day someone will do that…
October 31, 2020 at 10:33 pm #117775
November 1, 2020 at 8:47 am #117776MikeParticipant
Thank you for the tips. I am really struggling with the unpredictability of the disease.
Walter I was wondering what curcuminoid supplement you use and the topical chinese oil? I have tried topical cbd products with minimal relieve. I think the brand that has worked the best so far for me is Charlottes web. Topical capsaicin to me feet seemed to make things worse.
I really wish I could get some sleep but I have two young children ages 5 and almost 2 and it has been really hard. I have been contemplating the cold showers but I was concerned about passing out due to my autonomic nervous system involvement. I think I may try this but work my way up slowly. It is interesting you mention exercise causing the disease to come on with vengeance. I was a runner before this disease and after my initial symptoms settled down and the dx was still unknown I ran a road race. Shortly after that I caught a mild cold and bam flared up and haven’t been the same since. At least with that flare up my neurologist promptly diagnosed me. I have been on ivig and then transitioned to sub q iv. Up and down on the prednisone and have tapered down. We have discussed additional treatments but with coronavirus we decided to hold off for now. Overall I am in a better place then I was last year when hospitalized, but nowhere back to who I was. Still hoping to get there some day, but also realize I may not. It has been hard letting go of who I was, but just trying to focus on what I can do instead of what I can’t
November 1, 2020 at 10:56 am #117777Peanut-WIParticipant
Hi Mike, I feel for you, literally. I wasn’t able to get my symptoms under control until two years into the disease. It is when I switched my primary Dr that I found her to work with me instead of against me. Everyone is different, but here’s my experience. She worked diligently with me to get my pain under control but it didn’t happen overnight. I now take Morphine Extended Relief 3x daily and Oxycodone Immediate Relief 2x daily for flare ups. My numbness and tingling put me through the roof, so she put me on an Venlafaxine Extended Relief. This is an antidepressant but it’s side effects relieve the numbness and tingling. Not to mention the antidepressant keeps me positive. None of these are high doses and don’t make me dopey all day. As far as blurry vision, I found out Prednisone caused me cataracts. Once these were removed, I don’t get blurry vision at all. Again, this is was what worked for me. I wish you well. Be persistent and it will get better.
November 2, 2020 at 8:00 am #117779Walter KParticipant
The Curcuminoids I use here in Australia may be different brands to what you can buy in he US but they all do the same trick if they have the right concentration of the two main ingredients in each tablet namely Curcuma longa extract equiv to dry rhiz 15.8gr containing Curcuminoids 600mg, also Piper Nigrum extract equiv to dry fruit 140mg containing piperine 5mg.
I used Natures Own, Healthy Care and another brand depending what is on special at the time and I never noticed a difference in performance between any of them. I started taking one a day initially since that is what they say on the box but take 4 at the moment and believe I can up that a lot more. I also heard people using fresh Curcumin but it is not my taste.
The Herb oil I use is called Medicated Oil Wangwan Brand and I bought a few bottles in Thailand. The active ingredients are per 100cc, Plai extract 35cc, Methanol 7cc, Methyl Salicylate 10cc,.
Again I am sure there are many equivalents available in most countries.
Here a couple of things I would like to add to my previous post:
Don’t: Don’t drink alcohol, not even so called alcohol free beer since even that contains traces of alcohol which seems to agitate my nerves and trigger a new onset of the disease just when feeling a little better.
Try not to stimulate the old nervous system too much. That includes tea, coffee and Coke, too much computer or screen time.
I feel that apart from the damage in the peripheral nerves there is quite a bit run by the central nervous system.
That reminds me at some stage in the beginning of my journey when I experienced something that felt like some wires just fried in my brain. If I didn’t know better then I would say that is what happened. Ever since the things went downhill.
The consumption of alcohol while doing several hour long gym style workouts may have played a role…
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