I apologize if this reply doesn’t post correctly, but this is my 1st time on the web & this is new to me. However, you seem to have some parallels to my progression, so I wanted to “chirp in”. It aggravates me when people get passed around from person to person for answers instead of saying “I don’t know” or “I’ll get the answer for you”. So, I’ll try to tell you my experiences & share what I know in the hopes it may help.
I’m sorry you’ve had such a rough road. It is tough when you have a “rare” disease getting everyone to be on the same page and not just hear your concerns, but listen to them as well.
I went undiagnosed for quite some time as physicians, multiple specialists, physical therapists, etc were all convinced a herniated disc in my back was causing my problems. I was so frustrated because no one was listening to me, the patient, that the symptoms I was having were definitely not related to this issue. You think I would know as this was my disc that I’ve dealt with for years, so I know what symptoms & pains it causes when it flairs up.LOL.
Finally, one specialist finally LISTENED to me & a few tests later we had my diagnosis & treatment was underway. I literally cried for all the wasted time I had spent & all the neurons that were lost that I would NEVER get back because people wouldn’t listen to me & kept repeating tests that were already done. But, I was thrilled to not have to deal with this anymore
as I am sure you are as well.
First, I don’t know where you live, but you need to find a neurologist who can treat your CIDP or can refer you to someone w experience to either treat you or oversee your care in coordination w your current doc. Always try to get the best treatment for yourself, be your own best advocate. I know this can be difficult. I was the ONLY patient my doc saw (& they were a specialist) & was so tired of explaining to medical people- docs included- what CIDP stood for & what it is, I started carrying brochures around with me…to try & help educate anyone I could. Please, contact the International GBS-CIDP Foundation, you can find them on the web & they are a phenomenal resource.
I am very concerned about you having repeated infections in your central line. What type of line do you have…PICC, a port, or other central catheter? Have they cultured it to see what comes back? (this way you can determine the source of the infection, what it is & what to treat it with successfully). An Infectious Disease doc can be a fantastic help when sites get repeatedly infected- they really are the experts. Also, when they replace your line, are they just putting it back in the same spot or are they rotating sites? Are you on oral or IV antibiotics? Is everyone who touches your line using sterile/aseptic technique? All these things are very important and can be discussed w/ ANY member of your healthcare team. In regards to this, everyone should be on the same page.
I hope you can resolve this issue quickly, as I know it’s not pleasant having lines changed frequently (as I have been in that predicament). It will also take one thing off your mind so you can stay focused on positive things like getting well!
The fatigue…ugh. That is something I deal with daily. But, I just try to pace myself as best I can & not overdo things. I did find that if I overdo things, I could have an exacerbation of my symptoms. In talking w/ others, many say that as well. I read something on Facebook called “The Spoon Theory”. This was a good way to explain how people with fatigue need to tackle chores in steps/spoons. Its cute, if you care to look at it.
In regards to the steroids causing fatigue, I’ve never heard or experienced that myself. In fact, I’ve experienced the opposite. On steroids, I gain weight, get “jittery”, like a kid on a sugar rush who can’t sit still, can’t sleep well (even less than I do on a regular basis), and find I have a bit more energy. So, I’m sorry, I can’t corrolate your fatigue with the steroids.
Pheresis can be tiring in itself. And you are doing it so frequently. Are you going to continue w pheresis, switch to IgG (which is a standard treatment these days for IgG), switching to oral meds, or will you be stopping treatments as you’re regaining strength back(fantastic!!!)
Do your docs have a long term plan yet?
I can tell you that fatigue is a symptom common to CIDP patients. For me, I found the best thing was a good diet (I saw Nutritionist/Dietitian as certain nutritional issues are seen w CIDP), eating several small meals/day w frequent snacks & down time for a rest if needed. For me, this helps, but everyone has to find what works for them.
Not sure about your leg turning in. Is it neurological from the disease?, musculoskeletal related to weakness, or something else? These are things to be addressed by a physician/PT. I did have a problem where I was dragging my leg somewhat, but this was related to the progression of the CIDP & was more pronounced when I was fatigued or having an exacerbation of the disease.
Im sorry for the long reply, but I wanted to address your questions/issues. I hope my reply gave you some help. If you need anything, don’t hesitate to reach out to me. I wish you the best & continued progress with regaining your mobility, strength & endurance.