Chronic Inflammatory Demylenating Polyneuropathy, well and my dogs

This is just an image I found off google, but it could be me right now. One of my many diagnoses is chronic inflammatory demylenating polyneuropathy, or CIDP. Despite being dependent on assistive devices that I don’t mind so much as they allow me to get around, I forgot about the excruciating pain of CIDP. This man is clutching his hand that looks red hot. My hands are only tingling and alternating between that and numb. My feet though, they feel like someone stuck them both in fire ant hills to halfway up calves. The immune globulin therapy I’ve been on a year next week has mostly gotten the nerve pain under control. Unless you have experienced nerve pain, it’s hard to describe. Sometimes I feel lightning bolts in my body. When I exercise, I pay the price of having intense buzzing in my legs that I have joked to a couple friends who were interested in my health experience that my legs have a more active social life than I do as it feels like that constant vibration when text messages come in.

I’ve been in a pretty rapid decline towards a pretty full blown relapse. I figured I could muscle through it and just forget it was happening until I couldn’t.

I have been doing a weekly treatment of hizentra or SubQIG, which means I stick 6 small, but extremely painful needles (for me) into my fat basically. Sometimes I do my inner thighs. Sometimes I do my stomach. It takes about 2 hours and feels like bees stinging me the whole time. I get huge welts that don’t really go away so much. They get smaller and less painful, but my body has New “scars” from treatment that is supposed to help. Last Sunday I just had to be still in my bed as it was all I could manage.

This is what happens to my stomach after infusion. This was the morning after. My flat stomach swells and it hurts! But I enjoy the freedom of doing my infusion at home, myself and have more ice packs than food in my freezer to manage the pain.

This is a brief description of the disease. My specialty pharmacy that delivers my weekly immune globulin supplies called today to schedule my delivery. Very important to be home as you definitely don’t want your thousands of dollars of medical supplies to be stolen off your porch! I wouldn’t be happy and sure the thief wouldn’t be so much either.

I said that I was having an increase in symptoms and could I get an increase and jokingly said, “or could you send an exterminator to get the fire ants out of my bed?” She gasped and said, “that’s what it feels like?” I just kind of casually said, “yeah” as my feet and calves felt unbearable. She immediately transferred me to a pharmacist.

I had no clue what a specialty pharmacy was. I didn’t even have a clue when I started getting my supplies from them except it must be the same as mail order pharmacy as I’m completely fine, right!? Not so much. Specialty pharmacies are designed to be built on a patient centered model for critically ill and people with complex diseases that need extremely expensive biologic medications or medication made from human tissue. My infusion is the healthy immune cells from thousands of plasma donors and all I can say is that it isn’t cheap, except my specialty pharmacy worked miracles for me.

Within 2 1/2 hours the pharmacist had called me back, had already contacted my doctor and said I would not be doing my at home infusion this Sunday. I’m headed to the infusion center for a week of IVIG and we were discussing the complexities of having to take the steroids that go with this that suppress the immune system in a time of COVID and lots of “well, umm, your immune system is going to be affected and right now, well, umm, it’s something to be concerned about in these times”. I reassured her I don’t really go anywhere except the store. I did go to an in person yoga class last night where we were all 10 feet apart in a basement of a building with a new ventilation system and my yoga teacher put on her mask to spray down the floor with who knows what to sanitize it. That class fed my soul. I was looking forward to next week. There won’t be a next week or week after that. I’m staying home with my immune suppressed self. A painful reminder of how it’s not great in good times. It could be deadly to me next week.

I’m managing the reality that next week I will feel terrible. I’m prepping food to distract from the pain. I’m figuring it out. I’m rearranging other appointments. I’m contemplating boarding my dogs as it’s hard to explain what a “loading” dose of IVIG does to me. My CIDP support group is full of people lamenting the dreaded loading dose, which means you get a LOT over multiple days meaning the fatigue becomes overwhelming. Your muscles ache. You get back pain. I always get the worst migraine for days. I shiver like I have a terrible flu. My last loading dose had me laying still for 9 days after and could only look at a screen for a minute without vomiting. I couldn’t turn my head without wanting to scream from the pain. My loading dose before that was 4 years ago and was in the hospital remembering how much it hurt, but they gave me a morphine pump and took care of my every need.

So that’s a little about my experience with just one of my diagnoses. I’m grateful to have a diagnoses for strange neurological symptoms that have intermittently been bothersome for years. I’m grateful my specialty pharmacy took it so seriously as my body is constantly in a state of “strange” and if you know me well enough, I’m the champion of not knowing what a medical emergency or urgency is. I just power through and get it done. Pain or more pain. What’s the difference? It’s just how it is and even as much as it flat out sucks, it’s given me an appreciation for life and a spirit to embrace new things and be a person who I enjoy being navigating health challenge after health challenge and in between I do some standing on my head and scaling trails in the mountains around my home being the best me taking the garbage life can throw at us while simultaneously feeling the miracles I’m granted, whether it’s a pharmacist who said she knows my story well or a couple dogs who come in for a serious snuggle as they know mom isn’t feeling well, or someone I don’t even know offering me rides as her daughter has lupus and knows the infusion drill well.

If you are managing critical, complex, or chronic illness(es), it’s a challenge. It isn’t a big ball of rosy beauty, but I can have hope that in a couple weeks I’ll be back at it even if I also cry about my relapse and the implications of it. I’m staying strongly rooted in the grief and pain and strongly rooted in my joy to stay centered in times that are definitely unprecedented for most of our lives and understanding it adds a complexity to life that has gone beyond anything I ever thought I would experience.

Thanks for letting me ramble as a distraction from the pain. Good thing I have plenty of art supplies, books, and the ability to ponder a lot to attempt to keep me entertained. Sometimes fire ants are overwhelming and just accept they are there and as I wrote to a friend, “if my body didn’t constantly hurt, how would I know I was alive?”

Love

Lizzie

And P.S., just so you know I’m real. This sucks!

13 thoughts on “Chronic Inflammatory Demylenating Polyneuropathy, well and my dogs”

  1. As someone with an autoimmune disease I understand the struggle of these mind boggling diseases.
    This sounds so intense. Thanks for sharing I have learned something new today.
    Thank you for bravely sharing and fighting!
    Us spoonies understand on a different level the battles you face. Sending you light and love 💞
    Ps: did they try putting you on lyrica / preglabin?

    Liked by 1 person

    1. Lyrica and gabapentin have a side effect of bad depression in many, me being included. I’m taking gabapentin as a bandaid right now. It’s not working though. I’m just dealing at the moment. Sorry for your autoimmune struggle. The CIDP is just one of many I have. It’s just the one kicking me the most right now. Mind boggling is correct! It’s an experience that’s hard to explain. Best to you.

      Like

      1. No 2 cases are the same. The whole autoimmune thing really blows my mind. Hopefully with my YouTube channel I can chat more about research etc.
        I’m currently on disability. My Lupus and Fibromyalgia are pretty scary….

        Liked by 1 person

    1. Lyrica made me feel like I had the worst case of bipolar disorder. I felt like I lost my mind. After about 5 weeks, I realized it was the cause after talking to others with the same experience. I weaned off it with medical supervision and felt normal again. Lyrica is a miracle drug for many. Stopped my neuropathy but I didn’t have the official CIDP diagnosis yet. IVIG got rid of it, but it has horrible side effects for me. So I switched to the subcutaneous version and besides the swelling, I’ve been ok. Hopefully my week of IVIG and going back to my self infusions will work. I can’t imagine going back to regular IVIG. I think I’m in a little bit of future tripping right now about the possibilities.

      Like

      1. You are so right about the bipolar! I hate taking it because of that. Like one psychologist said ” you become a pain free monster”. Especially on a high dose. The pain clinic put me on 300mg a day with 40mg of oxycodone. They can’t do any procedures for my pain as it needs to be done in theater. I’m severely immunocompromised bcoz of the chemo I’m on so it’s a no go. Our infections are peaking because its winter in South Africa, so I was given those meds to keep me “comfortable” until they have clearance to do procedures again.
        Wow… I’m sorry you’ve been through so much 😔 but also glad you’ve found some meds that help.
        You do your own infusions? Is this because of Covid?

        Liked by 1 person

      2. I do my own infusions as it’s a different procedure that was approved in the US for my condition. It’s weekly and not a very hard process as you don’t go into the vein. It gives you a lot more flexibility and is supposed to maintain you better. The infusion Im going in for is basically the same medication, except a much higher and stronger dose and goes intravenously. It also has nasty side effects, plus getting to and from the infusion center where my infusion has been taking 6-8 hours a day. It takes a lot out of your life.
        You are strong to manage the lyrica bipolar. I couldn’t stand it. I think I was on 150 mg of lyrica. I didn’t feel right. They upped me to 450 mg. That’s when I knew something was wrong as my personality completely changed. So it took a long time to wean off, but I couldn’t handle that. I did lots of ice and heat on my limbs to manage the pain until my insurance approved the IVIG a year ago. I did it monthly for 10 months and was switched to the one I do at home.

        Like

      3. So glad that during this time you can do it on your own. I was freaked out about having to find a vein! Glad you dont have to!
        I’ve been told the max dose is 300mg which is toooo much for me so being on 450mg is insane! I can’t imagine what you went through. Holy crap!
        As long as you’ve found something that is working for you…. funny how we go through alllll these meds till we find what works. That in itself is so damn hard.

        Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s