I’ve been reading how people are exercising, jogging and just walking without assistance. I can’t get out of bed without help. I need help with just about all things. I can’t drive anymore and I currently use a walker, while I wait for my wheelchair to come in. I have neurogenic bladder and have had a Supra Pubic catheter since 2015. It took over 2 years to diagnose me and I’ve been getting IVIG since March of 2017. I’m in constant pain from my neck, shoulder, arms, hands,lower back, hips, thighs, calf’s and feet. I’m tired of the pain, twitching and fatigue. No one in my family understands and treats me like nothing wrong. They expect things I just can’t do. How do I get to a point where I can walk without assistance. Hell I’ll take being able to sit in a chair with my legs down for than 5 mins. Without my legs and feet going numb. Everyone seems to be so much better than me. It’s frustrating!!!
The most frustrating about CIDP is it effects everyone differently. I was diagnosed very early after falling and couldn’t get up to a bed alone. After EMG and spinal tap I received IVIG once. It took me a month in rehab to sit up my BP would drop after every 15 degrees they raised me. After 6 month of Out patient OT and PT I could walk 50’ on parallel bars. It is now 5 years later and I am still using a walker for short distances and wheelchair for shopping and long distances. Have to have a couple of days to recoup.
All I ask myself if I am better each time I see my neurologist. He now has asked me to see about going back on IVIG from Cellcept.
We all have bad days and good but must keep a positive attitude.I wait for the day when walking unassisted.
I hope this will help you see that we all are treated differently.
Thanks scottsmen52. I was having a really bad day when I wrote that. I know the key to recovery is one day at a time but, sometimes that one day sucks. I’m just incredibly tired and overwhelmed, with everything the holidays bring and I can no longer do. I’ll get over it and move on. Thanks again and I hope you have a Merry Christmas and a new year with less fatigue.
Pam
I hope that you get to feeling better and regain mobility and strength. Every day is different and sometimes things change for weeks or months at a time for me. I’ve had a slow progression over 30 years time and only was diagnosed about 5 years ago. Lately, I’ve had changes in my pain levels, and I’ve been very exhausted. I also recently had to give up driving as well. I guess my point is to get the best help you can while you deal with and adjust to the variations that this disease brings in your life. This disease is very individual in its effects on every person, and you have every right to strive for a better outcome that you have had so far.
Thanks Yitzi. I guess my frustration got the better of me. I just wish my doctor would have been straight up honest with me. I had no clue what to expect but, I was told the IVIG would stop the progression and for me, after 9 treatments, I’ve gotten worse and the disease has continued to progress. I have come to terms with the new me. I just had a bad day. It happens and I’m learning how to deal with it, through counseling. Thanks for responding and telling me about your path with this disease. I appreciate the time and energy you used.
Pam
I’m truly sorry for your constant pain and that your family expects you to keep up like you used to. The hardest thing besides living with CIDP is being married to someone with CIDP! Acknowledging our spouse fall in health is very hard so they keep things as normal as possible.
Reach out to them more and explain your conditions and your pain in clear detail. Let them know it isn’t terminal but that there is a new sheriff in town and it’s CIDP.
Seek out a pain management doctor because neorologist don’t treat it, it too dangerous to their practice. Please keep complaining and pleading for pain relief. Don’t fear additiction until you no longer have pain. Try some with THC too to ease the mind!
God Bless!
Bill
Thanks Bill. I have talked to everyone in the family as a group and individually. It’s hard for my children, who are 21(twins), to get used to new Mom. They come home for college breaks and expect me to cook all their favorites. I can’t do that any longer and they are taking it hard. They hate that I can’t do anything like before and they think that if they keep pushing I will become better.
I have a wonderful pain doctor, who has been good at trying to keep me pain free but that’s a joke. I haven’t been pain free in years. I wouldn’t even know what that feels like. It’s a shame you had to stretch you pain patch because you don’t have enough. Good luck at the doctors and hopefully you will get enough this month. Have a great weekend with the family. Enjoy every minute of it because CIDP, likes to wreck things, just because it can.
Pam
I don’t know how long you’ve been ill but one thing I do know, everyone is different. It’s been 5 years for me and I still have balance issues and numbness and tingling. First thing I recommend doing is to stop comparing yourself to others. Look at your own victories no matter how small they may seem. I remember what I considered my first major victory was standing holding on to the parallel bars for 30 seconds. It passed like it was 5 years. Are you taking physical therapy? if not, I would fight for it. I wish you well and please give yourself a break.
Narda,
I started with symptoms in 2015 and was officially diagnosed in February 2017. By the time the diagnosis came I had no deep tendon nerves in both legs, neurogenic bladder, muscle spasms and twitching all over, neck, lower back and both my arms were affected to the shoulder with major damage to the hands. Was using a walker then and am currently waiting for my wheelchair to be finished. I was having a very bad day when I posted this. Since then, I have returned to my determined self and am dealing one day at a time. I was not allowed to do PT due to the rapid decline and they will consider it again in a couple of months after I’ve have many IVIG infusions. My body was so week the PT technician was afraid I would become over tired and the muscle spasm would make it impossible for me to get around after a session. I appreciate you responding and I’m doing better mentally. Very hard to go through this journey alone. I needed to blow off steam that day and I figured I could do it here. I currently go to counseling to help me deal with my ever changing life. That has helped the most. Thank you once again, hope you have a merry Xmas and a great new year!!
Pam
Sorry to say this but your family is composed of, insensitive, ignorant morons. I’m sorry to have had to say this. You suffer enough without having to deal with them.
Pam,
You can write anytime. I went from being so angry, I think I created a new anger level and went from that to a student nurse calling me a genuinely altruistic person. I assure you that was not the case. I did however give myself measurable goals so I could see my progress even when others couldn’t. I’ll give you an example. I used to be a hospital clown, I had lost my ability to use my hands other than gross motor coordination, (using my hands clapped together to hold or lift something.) Each day I would touch my thumbs to the other fingers, couldn’t do it at first, took me weeks. I couldn’t hold eating utensils either. I fooled myself by picking up items that had a rubberized material on them. I took baby steps. I kept a balloon pump and balloons next to my bed and each day I tried to hold one and pump it up, no luck. It took me months to be able to do it. I can do it now, but I’m slower than I used to be, but it was something where I could keep track of my progress. I guess what I’m saying and what I’ve heard a lot is be kind to yourself, have achievable goals. I’m not going to run marathons but I can walk to the end of my driveway to take my trash out, took quite a while to do it. My walking goal was to take one more step then the day before.
I wish you well, write anytime you want.
Narda
PS Merry Christmas and Happy New Year and yes I will respond even on holidays.
I totally agree. I’m dependent on them financially and physically. As soon as my disability is approved and a back check comes, I am looking at some housing that is for the disabled and then living independently. Right now, I’m stuck. I feel like they simply cannot and will not take the time to understand just truly I’m hurting, fatigued and overwhelmed, with everything going on. I keep trying to get them to understand but they all chose to put their heads in the sand and not deal with the situation. They think that by pushing me, I will become stronger and that’s not the case. I appreciate the blunt honesty and it’s not something I haven’t heard before. I’m just concentrating on my health and ignoring them as much as possible.
Pam
Thank you Narda. I appreciate the very good advice and kind words. I hope you continue to hit any goals you set. I have a goal of being able to put socks on without assistance. I have not done it yet but, someday I will. One day, hour at a time.
Pam
My daughter told me that pain is certain, but suffering is optional.
CIDP will not wreck things, if we continue to view things still in our control. I wish you moments of joy, brief periods of joy that become our treasure to hold and magnify,making the bad times lessen in their intensity of us.
William T. Scott
713 XXX XXXX
(Number removed by modsupport for the member’s privacy protection. Please PM Wiliamtscott for his phone number if you’d like to call him.)
Pam, thank you for your response. I’m glad you took it in the right way! You have a tough row to hoe but I sense real strength in you. Real strength. I wish I could say more but I can’t. Just hang in there sister. God bless you.
Great story Narda! Thanks for sharing what your recovery is like and especially be kind to yourself!