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Living with Polyneuropathy CIDP, GBS, & CMT

I Have CIDP and I am from the Philippines

#LifeWithCIDP

I just started… somehow all I wanted was to have someone to chat with who gets it. About CIDP… The everyday everymovement even at still PAIN! The emotional PAIN when no one just does not understand… or even try to understand… or ask how are you feeling. The fear of the medication… not even that the finacial issues that comes with this disease.

I am from the Philippines… since this disease is rare there not much I can find groups with CIDP. Not a big deal… Not even from the Philippines are fine like this.

Just a place where I know there are some one else can get it. That there other people who gets the pain… and when people makes you feel stubborn.
When you just can’t do not because you don’t want to to but you just can’t because it is difficult and time you become so afraid of the unbareable pain.

Days I just like to shout out! Please STOP! I CAN’T DON’T YOU SEE I AM IN PAIN STOP ASKING ME TO WALK TO DO THIS DO THAT NOT BECAUSE I DO NOT WANT BECAUSE IT HURTS SO MUCH!!!

Some days I just want to sleep all day… But I can not the pain wakes me up. And days I just do not want to move because I fear pain.
Or some days numbness though it is painful I just got use to the pain and what ever…

Anyone else who gets it…

Hi Cam. I am sorry to hear you’re going through a difficult time. I’ve had CIDP for about 5 years but it mainly affects my motor nerves so I don’t have much pain it’s more weakness. Though I remember the first months/year when it all started I did have pain and I used to get moody and depressed whenever I had a bad day. Then one of those days I told myself that I had to learn to live with it because maybe the pain wasn’t going to change but I had to change and not let it ruin my days. I can see that you’re suffering from a lot of pain, maybe mine wasn’t that strong I don’t know. Are you currently taking any medicine for pain? Or under any treatment for CIDP?

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@Bvjarquin

Hello! Thank You for sharing your story with me as well… Thank you for feeling as well as mine and somehow we do both suffer pains like the whole body is brused. What ever movement we do. Most of the times I just take it some times if it is torture I take pain killers (over the counter) To answer your question if I am taking meds. I am not able to have medical treatment for CIDP because we are not able to afford it. I stopped going for check ups and stays home… doing my best to go on the day with all this pain. We just have to take it one day at a time…

Hi!
Sorry I didn’t write before, I just read the message a moment ago.

I am sorry that you’re not able to get treatment. I know that is really hard knowing you could do more but you’re not able to. For the first 3 years I didn’t get any treatment and didn’t have a proper medical attention. Fortunately, (I thank God for it) I got help to be treated outside my Country.

When you were diagnosed did the Dr suggest any treatments?

At first I was treated with Metylprednisolone but it didn’t work for me, it made it worse. Then I started with IvIg. And now for the last 2 months I’ve been taking Metotrexate once a week but I think it’s not working so well because is hard for me to walk, I feel weaker.

I try to stay positive, and believe everything will be fine.

Take care!

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