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Living with Polyneuropathy CIDP, GBS, & CMT

Crying Alone


#21

I am newly diagnosed with acute CIDP now with 3 months since diagnosis. I have had my initial 5 IVIG infusions (half of November and half in December).
Treatments helped enormously. It is now January 20 and I am now 1 month overdue for treatment. My neurologist moved from one medical group to another practice and medical group on January 1, 2019. I saw her first week January. She prescribed home infusion IVIG. Problem is, I live in CT and doctor is based in NYS. CVS/Caremark speciality pharmacy refused to honor her prescription of IVIG. Closest in network neurologist is 2 hours away at Yale New Haven Neurology and I am 6 weeks out just for an appointment. They refused to prescribe an IVIG treatment in meantime. So, I am now a month overdue for IVIG.

I just started this week with much greater pain. I was already on neurotin. NY neurologist prescribed double dose now of neurotin. I still have uncontrollable bouts of crying. It is really nothing to be upset about other than pain has significantly increased and disabilities are worsening rapidly. I have another month before my appointment with the CT neurologist on Feb. 25. I have a good insurance plan but on Obamacare website. It is BCBS.

So, bouts of crying continue endlessly without any real cause. The only thing I really feel is a complete lack of any sense of well being. It is quite an empty feeling. However, I did find something today that probably triggers the endless bouts of crying. My body cannot readily feel when it is hungry. When I try eating some carbs and pasta or protein like chicken or fish, the crying completely stops. So, I think people with acute CIDP cannot readily decipher when their bodies need some fuel and food. I would strongly suggest trying a straight protein first and if that doesn’t help try some carbs. Veges really don’t seem to satisfy my carb needs in the winter. Veges satisfy me in the warmer month. I hope that helps you. Try to focus on changing your overall system with proper food. Under any and all conditions, sugar makes symptoms worse so no sugar. Another thing that will change your physiology is doing something with your muscles that do work. Flex and rest them. Do whatever you can to change up your system both inside and out. I think you will find some relief. I found I food completely settles my system after crying for 2 hours.
Sending hugs, A


#22

My god! 800mg, 3 x day!?! Are you the size of the GoodYear Blimp? :woman_shrugging:t4:

When I was put on Lyrica, I stacked on 35kg within 5 months on a low dose. If I took what you’re taking, I would have burst at the seams! :face_with_hand_over_mouth::flushed::scream:

Had to stick to a low dose of Lyrica paired with Tramadol. :+1:t4:


#23

At 2400 mg of gabapentin I haven’t reached my max dosage. For the record I’m 6’4" and 235lbs. After reading up on Lyrica I won’t take it plus the price is exorbitant. No weight gain from gab. Hope everything works out for you.


#24

Have you tried Venlafaxine (for the lower limb nerve pain)? Has helped me tremendously. Pain killers won’t help. I have to take tramadol because I have burning skin which feels like I am being mircrowaved, but does nothing for my leg a foot pain.