Less IVIG, more fatigue and need a new bed
AnonymousAugust 18, 2012 at 9:32 pm
I’ve reduced my 6 infusions a month down to 4 a month. I wanted to see if I could and have I enjoyed having 2 extra non-infusion free days a month. This is month three of less infusions and the fatigue has escalated. I live in a hot humid area and have been outside in it more than I should. I love to garden and do way too much when out with friends or doing errands. I kept saying oh it’s the heat but it’s me fighting fatigue. When I do sleep I’m out for 10-12 hours. Makes my day start later than most and I wake up feeling so tired I’m in a fog.
As we know facing life long infusions is not what we thought we’d have to do but having them gives me more options than my former house bound life. IVIG has greatly helped with my uncontrollable nerve pain and I can now walk without crutches or a cane. I think I’m going to wait till it’s cold weather and see if by chance my fatigue lessens. I’m truly not sure what is CIDP progression at this point, a period of relapse or something I can jump start again with having more infusion. The last time I saw my neurologist in January he said you know this disease is progression (for me) and I planning to see him again soon.
My other question is I’m looking for a new mattress set and with neurapathy makes it so hard to till what is comfy when trying out one in a store. I have a Euro Pillow top in the guest room and it’s way way too soft. My old bed feels like a rock but it’ll do. I’m thinking a Cushion Firm or Plush Firm bed. The stores have entirely different names for their beds so it’s impossible to compare them. I’ve done my research into coil counts, coil gauges and foam material. Had a friend go with me recently as my “mattress gauger” for feed back on firmness vs soft of some mattresses. Beds are costly but I need one and will make a choice somehow.
Hope all of you have had good summer. My yard is full of bright flowers and greenery. I try to still as busy as I can and always seem to do too much but that is me. I’ve been rooting for Dick with his IVIG, Emily having less IVIG and Goodney with his trying to go off IVIG all together.
August 18, 2012 at 9:46 pm
I recommend Tempur-Pedic.
August 19, 2012 at 3:53 am
What about a sleep number bed? A friend of mine has one &, of course, I had to try it out. I immediately thought it would be good for people with CIDP. You can pick your comfort level by the day or by the hour.
I’m sorry to hear you have fatigue. Hopefully you will get some rest & the fatigue will ease up.
Emily just went 6 weeks between infusions…44 days to be exact. She seemed to do ok but had some leg pain. It’s hard to tell if it was growing pains though…she gained 2 lbs & grew 2 inches in 2 months & she’s still growing. Before long she’s going to be taller than I am.
AnonymousAugust 28, 2012 at 12:34 am
I love my select comfort/sleep number bed as I can change the firmness depending on how I feel. And I do change it often … I also have the model that the head and knees/feet raise/lower, so makes it feel like I’m sleeping in a giant lounge chair some nights! But I also like to have all those adjustments as I get great relief in my feet by raising them higher than my head …
I hope you find a comfortable bed and good energy,
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