your input is needed
AnonymousApril 20, 2009 at 2:44 pm
I just need a reality check. I have been fighting two different respiratory/sinus infections and the flu all in one month. At this moment I am struggling with pain in my body and extreme exhaustion. Like the kind where I can barely stay awake and the thought of doing anything is overwhelming. I tried walking outside yesterday to get some air and literally had to turn right around and get back in the car because my back felt so weakand could not support my legs. I know this probably is a no brainer, but I can’t help but feel bad about myself. It has been over a month and I just keep thinking if I just exercised and got myself moving I could combat this. I feel like its a vicious cycle. I have a hard time moving, I have gained weight which makes it harder to move, and I think if I just could exercise I could get better. I just want to know if others go through this and what do you do? Thanks.
April 20, 2009 at 2:58 pm
I am so sorry you are feeling so poorly. Sounds like you got hit with the flu/cold type thing going around. You got it a bit later than most, but it is nasty. Not a normal flu or a cold and lasts for quite a while. It does get better (something to look forward to). Right now, you need to take it easy and rest. Let yourself heal. We get hit a lot harder than most people and we have to take it easy a lot more often. Do what you can when you can do it, rest when you have to, be kind to yourself. Also be careful…there is another flu bug making the rounds!
AnonymousApril 20, 2009 at 3:03 pm
I don’t know if this will help but I can relate to the way you’re feeling. When I get a cold and sore throat it takes me weeks and weeks to get back to ‘normal’, I had a bad cold and flu symptoms about 10 days ago, it knocked me down, had to take time off work, although the cold has left I still feel weak and tired all the time. When I’m unwell like this I stop doing yoga which has helped me a lot throughout the recovery, but yoga would help me to feel more energetic, so it’s like a vicious circle and from where I’m standing now it seems neverending. However, I experienced this before and slowly I will get better (hopefully) but it takes a long time and I tell myself I must be patient. Sometimes it’s hard not to feel depressed about it. I try to be philosophical and say to myself ‘this too shall pass’.
AnonymousApril 21, 2009 at 8:00 am
As you well know, when I am feeling bad, I come here and vent. Many people come around and re-assure me, every time…including you.
I am so fed up with this CIDP…I cant put it into words.
Take some time to rest to get yourself back on track…it’s going to be ok.
I know it’s hard and I know you are just as frustrated as I am…but hang in there, “tomorrow is another day”.
get well soon,
AnonymousApril 21, 2009 at 9:36 am
Since I have had GBS I have been really healthy. Not catching everything that goes around. I have returned to that kind of immune system protection. Last week I got a low grade fever and sluggish. No other symptoms. Until Thursday and I went to bed a few night earlier than usual. Thursday night I went to bed and kept waking up with severe chills. I was too tired to get out of bed and check my tempature. I knew it had to be a fever and the more I shook the more the aches and pains got. I just stayed silent till morning and asked for DH to take my temp. 103. He paniced! I did not look ill and was showing no other symptoms. He took care of me and then went to work and I went back to bed for the day. Drinking lots of water and sleeping. He come home from work and it was still 103. So we attacked it without letting up again! Finally for the second time it broke! Took two days for it actually to break and stay down. I have been recovering since then and no fever. I do a little bit and then go lay down. Back to doing what I can to get REST! I am eating better now and getting more done. During this time it settled in my back which is my weakest point. That is feeling better now and able to sit and do more now. Tiny short projects. REST REST REST. I am back to doing my yoga and exercises but went back to a starting point at I was at the beginning of my rehab……just enough to keep me moving and range of motion and flexible. Breaking no records but staying alive! Still canceling appointments with friends, but looking forward to the warmer weather coming in the end of this week! Make sure you get some sunshine! Listen to your body! I did not have any of the breathing problems that others have got but this fever took alot out of me! Take care! Put on a happy face! 🙂
AnonymousApril 22, 2009 at 7:18 am
Hi Linda! Have you been checked for Asthma! That can cause problems like you are describing. Funny thing! A person can be fine for many years and then suddenly develop Asthma. Adult onset of Asthma! I was 40 years old and fine to suddenly wake up one morning with respiratory problems. Sat at home trying to doctor it thinking I had a respiratory virus and then finally got irritated and went to the doctors. They did a pulmonary functioning test and it came out being asthma! They are reporting more cases than ever because of the ozone and greenhouse effects. Air quality is so bad that each year thousands are getting reported for developing Asthma. And people with Auto Immune problems are usually a target! Hope you feel better soon. Think I would check with your doctor and have him test you for this. You might start feeling better! Hugs
AnonymousApril 22, 2009 at 3:26 pm
I know you saw my post about when my neuro sent me to a neuro sleep specialist…
Because I have advanced CIDP, and on a slow downhill progression, when it attacked my autonomic system, it hit my phrenic nerve, which controls the diaphragm. I cannot take deep breaths. So, if I were to even get a cold, my doctors said that might even put me in the hospital, as it would stay in the lungs and I unable to cough it out. Plus being on high dose chemotherapy now, and am supposed to stay out of the public, for fear of catching the flu or even a cold.
But, I must report on my update with the neuro sleep specialist.
I have a bi-pap at home, when I unable to breathe well during the day or night. Now, they want me to use it all night long, as well as needed during the day. And now my Pulmonologist is adding Oxygen to it, as my O2 sats are down to 80.
But, the main reason my neuro sent me to the neuro sleep specialist, is to try to fight the great fatigue with the CIDP.
And I must say, it is making a little dent in it.
She first had me try Provigil, even increasing the dose, and it didn’t do anything.
Now, I am on Ritalin. I take 10mg when I first get up, (usually 4am-5am), then again 10am-11am. This gets me through the afternoon without having to go to bed. She wants me to play with the doses, until I find what works best, (I first started with 5mg), increasing up to 20mg three times a day.
Last weekend, my partner was celebrating his birthday, so I took an extra pill in the afternoon, so we could have an early dinner at a restaurant, and I wouldn’t fall asleep in my bowl of soup…lol.
So, the Ritalin is helping me a bit. As I mentioned, I am still playing with the doses right now. I do notice, though, that after about 3 or 4 days of it, I have to take a full day of bedrest to make up for the fatigue.
But at least it is helping me on many days. I used to hate having EVERY day from the fatigue, having to go to bed twice daily and sleeping for 6-7 hours each time. I am not ready to become a bed-ridden person yet, and the Ritalin is helping.
I just cross my fingers, I don’t pick up a cold or flu. I have been staying out of the public for about 2 years now, since the CIDP has become worse, and have not gotten a bug yet…knock-on-wood…
AnonymousApril 22, 2009 at 9:26 pm
Linda: I am sorry things are so rough. But best medicine is to love yourself and treat yourself kindly. No point in beating yourself up for what is not in your control. I hope you find a way to accept your limits without giving up your hopes and dreams for your life. But I think the best thing to do is take stock of what those limits are and instead of fighting them learn to embrace them and build a protective space in which you can be yourself.
Kit-I had the same fever last week. I overdid on Saturday and on Monday developed a 102.5 fever with no other symptoms but fever and feeling awful. We call it my residual flu and it sucks. Wiped me out for a week. I hve done all the tests possible in the past for the fever and nothing ever shows, so nothing to do but take tylenol and crawl into bed for a week. If I am careful it does not happen often, but it sure takes a lot out of me just as you said. Jeff
AnonymousMay 8, 2009 at 3:08 pm
Thanks to all who responded. I am so grateful to all of you for listening and understanding. I am doing much better and am going to a ear, nose, throat specialist for chronic sinusitis. Also am getting scheduled for the last leg of the sleep study started two years ago. FINALLY. I too, am just trying to stay away from sick people and just being gentle with myself. I hope everyone is staying healthy.
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