I have developed some new symptoms during the past few weeks; more muscle cramping, particularly in my hands and calves (sign of getting stronger, perhaps?). Also, water tastes metallic and food different- almost unpleasant. My sense of smell is off, as well. The odor I smell is like some chemical mixture..and it's with me almost constantly.
I was on Imuran for about a month. Started with 1 pill x 1 week, then 2 pills x 1 week. When I upped the pills to 3 (according to doc's directions) I started with the nausea and vomiting. I cut back to 2..and still had the nausea and vomiting. He prescribed an anti-nausea pill, which helped a little, but I still was experiencing the nausea. Yesterday he instructed me to stop taking the Imuran (Azathoprine)..and finally the nausea and vomiting are gone. I'm still on Prednisone- tapered slowly from 60mg down to 10 mg
I wish I could say I feel better. I feel good (stronger) in the mornings, but if I exert myself at all, I begin to feel weakness and fatigue. The more I do, the more I can't do. I hope I'm making sense.
My taste buds have been off for a long time. Things I use to like now make me gag as soon as I put them in my mouth. I have to be very careful when going out to eat because I have actually started heaving at a table or at the bar (which is where I usually eat when I go out alone). I have a water cooler at home (w/a 5 gallon water on top). I don't drink tap water. In Atlanta, there are too many water main breaks. I don't want to risk drinking water from tap and find out there was bacteria in the water. I have had constant post nasal drip. I FINALLY got to go back to my refering neuro. He prescribed IM benadryl. This helps calm the nerve pain and has virtually stopped the post nasal, which was causing the nausea. Ginger ale helps A Lot! I gave up caffeine along time ago. It dehydrates and is bad for my one kidney. I also, if I feel the need for a soda, drink Fanta Orange or Grape or Sprite/Sprite Zero (but those are a rarity).
My only drugs are Nadalol (tachycardia/high BP); Vitamin D; topamax(for nerve pain); now the IM Benadryl PRN; zofran prn for nausea; baclofen (it's a muscle relaxer but it helps w/nerve pain for me); dialuded (for the pain); and morphine (again for the pain). Neurotin messed my head up too bad. I really don't like taking the narcs. IM benadryl works for me but it was a devil getting a doctor to prescribe it for some reason.
If the pain gets to bad, I take 1/2 a dialuded or morphine and add 50 mg of the benadryl. They tried hydrocodone but it gave me headaches.
You are making perfect sense...unfortunately for many of us, the more we exert ourselves, the more intense the pain and symptoms become, which often doesn't set right with our mentality; I had that no pain, no gain kind of thinking. Long ago when I got diagnosed and my energy was zero, I told my neurologist that surely if I went out in the Arizona sunshine and did some laps, I'd improve. He said, "Don't do it. You will get worse because you are apparently in a bad episode of CIDP, CFS and Fibromyalgia". I thought, "what is that stuff anyway"? He didn't even seem sure. He then said, "If you do it, you may end up bedridden for awhile." I took that as a personal, babyboomer challenge...dumb. I mmediately went out and jumped in the pool...did a few laps and felt great. As I stepped out of the pool, I had absolutely no leg or body strength to get out of the pool. I had to be rescued, and was bedridden for weeks. Sometimes you have to cry "uncle" and lay low...other times you can rise up and get exercise and things done. We need wisdom to know where we are at, each and every day:)
Lori, I am the same way. I use to work out 3 times a week w/a personal trainer; one day included walking 8 miles a day in less than 1 hours and 30 minutes across hard terrain. Now if I drive 1 hour and 15 minutes to see my God Daughter for 2 days, I can't get out of bed for 4 days. I have gotten smart; I have someone drive me. Her mother, my best friend since she was in the 7th grade, me in the 8th (although we are the same age, 47), can't understand I am not able to do what I once was. I push myself and then pay for it. I have another high school classmate that has MS. I just convinced her to start using wheelchair assistance at the airport. I physically cannot do it. But it was hard to admit it. And I cry when I think what I USE to could and now can't. And because we have a "hidden" disease, people look at us and say "Why are you in a wheelchair? You don't look sick. You are taking advantage of the system so you can go to the head of the line." I answer them very calmly, "I have a rare disease that even if I told you, you would not understand. But thank you for your concern." I have accepted I can't do what I once could. Unfortunately most of my friends have not and I have not shared w/ most of my family and friends and business associates. It's not worth it. I only go out when I can repesent myself as I once was. Easier that way.
I know it may be easier, my friend, I sometimes try to do the same, but at what cost? I can't even pull it off on a good day anymore! ha! I am so tired of saying, "Look, it' kinds like MS, but more rare..." Most do not want to bother about knowing anything, even some of the medical field. Sad. I'm afraid if I ever meet someone in person with it, I might attack them with hugs!
Thank you, Gary, tcwlkr and Lori. It somehow helps to know I'm not alone in this.
Gary, I drink Dasante bottled water..and no sinus issues. I think it must be the nerve(s) that affects the tastebuds. Tcwlkr, the same thing has happened with me; foods I once liked just don't taste the same. I was a diet coke addict..and now, it tastes like soap..or car oil- not that I've tasted either.
I can relate to just about everything the three of you wrote about in your responses. Just got back from a wedding reception, and I'm exhausted..so I'm going to sign off. Thanks again for the tips and for sharing your own experience. It helps. One thing I forgot to mention is I have tremors in both hands now. Sometimes I shake so bad, I can't use the computer mouse.
Your welcome, I'm exhausted and I just woke up! I slept most of the weekend and from what my wife says I didn't miss much. I'm lucky? I only have a tremor in my left hand, the one I used to use for playing guitar, (fingerboard) but I might try doing it left handed, it may work if I practice enough. (rearrange my brain) There's a talking program for computers you might want to look into. Gary
I too had the muscle cramping. I would wake up with horrible Charlie Horse cramps in my calves or feet. My neuro recommended I drink 8 oz of tonic water with quinine at dinner and another 8 oz at bedtime and that has helped immensely. good luck.
Gary, thanks again. Sounds challenging and cool. Good luck with that. I'm sure with practice, you will be able to meet the challenge.
springmang said:
Your welcome, I'm exhausted and I just woke up! I slept most of the weekend and from what my wife says I didn't miss much. I'm lucky? I only have a tremor in my left hand, the one I used to use for playing guitar, (fingerboard) but I might try doing it left handed, it may work if I practice enough. (rearrange my brain) There's a talking program for computers you might want to look into. Gary
Lisa, thank you for your response. I will try what your Neuro advised. I've been taking a muscle relaxer twice a day..but the cramps continue sporadically in my hands and legs.
Re the bad breath from prednisone, I don't know. My husband says my breath isn't bad..but, I have such a dry mouth, because my salivary glands are not working. I'm completely off Prednisone for a few days now. Feel weaker and really tired; fell asleep in church today..but the water doesn't taste as bad, and food is beginning to taste better.
I appreciate any suggestions and advice. Must mention that I go to another Neuro on Friday- the one who has treated me in the past with Botox injections in my neck for spasmodic dystonia. He will give me a second opinion. I was diagnosed a few months ago with MADSAM Polyneuropathy, which is very similar to CIDP.
Good to know there are others experiencing the same symptoms..others we can share our experience with and vice-versa. Take care, Lisa. Linda
Lisa Jakee Hilton said:
Linda:
I too had the muscle cramping. I would wake up with horrible Charlie Horse cramps in my calves or feet. My neuro recommended I drink 8 oz of tonic water with quinine at dinner and another 8 oz at bedtime and that has helped immensely. good luck.