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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Reply To: Newbie looking for advice about symptoms and appointments

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Newbie looking for advice about symptoms and appointments › Reply To: Newbie looking for advice about symptoms and appointments

August 29, 2013 at 6:23 pm #4237
JenB
Participant

The 3 hour trip (6 hours total) did a number on me. I was in so much pain and I have been wiped out energy-wise ever since. My neck and lower back are still mad at me. I look forward to my upcoming appointments but I DO NOT look forward to the actual traveling part.

I use Oval 8 finger splints for my fingers but I haven’t found anything yet for my thumbs. I like the design for thumb splints from Silver Ring Splints but they are obviously not a convenient, cheap option. All other braces/splints I have found always immobilize the thumb and wrist which is good for the really painful days but I want to still have full use of my hands and just prevent hyperextension only. The best thing I have found so far is to use those skinny banadages/medical tape type things and wrap my hands up like I was going in for a boxing match. If I play with it just right, I can stabilize the joint while still having full use of everything. I wrap it around the thumb and loop around the palm a couple times and usually one finger to help hold the bandage in place. It can work really well until my skin gets irritated that it has a bandage on it. My thumbs have been driving me up the wall because they are not stable at all and anything I try to hold on to bends all of my fingers and thumbs backwards.

I hope some of that made sense. My brain is super stressed because my mother-in-law had a stroke today. I have no idea what condition she is in and I know at the very least that my husband will want to go see her soon. I would like to be able to go myself but I have had to miss out on trips in the past due to issues and I am in worse shape now than I was then. His family is over 1000 miles away so it is not a “pop in real quick” type of trip. And if he goes on his own, I have to be all alone for an unknown length of time. It is such a downer that my medical issues make this stuff so much more complicated. I would love to be able to show my support and be there for the family but I don’t know if I can. She is a wonderful lady and, even though I haven’t spent a lot of time with her, she is like a loving mother that my own mother never was/is for me. She is only in her 50s so she is still really young and I suspect it has to do with major surgery she had earlier this year to remove part of her digestive tract. She had a big blood clot develop after that and was on blood thinners for a little while. Fingers crossed she will recover and be okay.

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