archived from original forum   -  schatzi author


thanks deborah,
It really has been a help reaching out to others.  I have been sick for a while but have only recently told friends and family.  I swear by water therapy and my dogs for my pain relief.  So my running joke with my hubby is that dog spit will cure me.  Lots of kisses. ( For the non dog lovers I am sure this sounds gross-sorry).
ramona, so sorry to hear of your pain.  As hard as it is to be in pain, knowing there are others suffering is somehow harder.   I was always really athletic, and I would notice that the more I worked out the less fit I became.  I would not be able to move after.  Now if I go to a movie or meeting, I have to wait until the room clears out and then stand up.  I can barely straighten up and walk.  very strange.  I believe it is the polyneuropathy doing this.  The joint, muscle and long bone pains are the worst sxs.  I also use music and imagery. you can practice relaxing breathing  while listening to music.  then you practice letting your thoughts go to a better place. could be a special moment or a vacation place you love.  There is so much out there about the mind body connection.  but I would say that with severe chronic pain, you need to separate the mind body connection.  I have to really use healthy denial to function day to day.    
I am down to part time work now.  but standing for long periods is never good.  when dealing with a disease like mast cell, all of the mediators being released could cause so many different actions and reactions in our bodies.  
Not sure what I may have done to cause a flare up today, had to call out of work.   I ate tuna yesterday, but I had been ok with it before.  probably a bad decision on my part.  I am thinking of putting a bed in my bathroom, so I can be more comfortable in there for hours at a time.  (only kidding).
I really am so greatful to have found this group.  It was just what no doctor has unfortunatley suggested.  You would think that with a disease as nasty as this social support would be a suggestion by all our providers.  well, maybe we will all continue to educate our providers.
schatzi

archived from original forum   -  jysmith author



Hi all!
  Don't know that this will be helpful, but thought I'd throw in some thoughts about exercise that has worked for me.  I have a lot of problems with inflammation, and it seems to be the enemy of exercise, but exercise seems to help my inflammation over time.  Makes it awfully hard to stay in shape, though!  
  For me, there are a few things that have made it possible to exercise, and I've really suffered with rebound pain from exercise and even from just walking around the house or standing up too long.  There have been several times that I've had to work back up from being completely de-conditioned, and it's not for the faint-hearted!  But, I have to say it's been worth it in terms of increased energy.  Of course, if you're in a horrible flare, don't push yourself.  Wait until you're having a pretty good day and take it very, very slowly.  Just moving around in a warm pool can be really helpful and a good way to start if you have access to one.  If not, there are plenty of free ways to exercise.
 ALWAYS start with slow, gentle stretching before exercising (minimum 10 minutes, 20 is better).  Hold all stretches for at least 20 seconds to get long-term benefit from it.  Yoga stretches are great, and there are also some programs on FIT TV and some other exercise channels, or there are stretching videos at public libraries.  
  Stretching after exercise is also critical, same thing as before.  Sometimes I even stop in the middle of a walk or workout to stretch a little.  
  Build up exercising slowly.  Start with a short walk, even if that's just from the bed to the front door and back.  Use a can of food or a one-pound weight to start doing upper body strengthening.Just because the first workout felt really good, doesn't mean you should do double the next day.  Build up really, really slowly.  If you start doing too much, you can have rebound pain, which doesn't make you want to do that again!  
  Heat and Ice.  If your muscles aren't warm, a little gentle heat will help loosen them up.  If you're in really cold air conditioning or in winter, this might be helpful.  After exercising and stretching, ice your neck or low back or hips or wherever you think the pain originates.  NEVER ice before you stretch or exercise, because it stiffens the muscles and can cause an injury.  But, after exercise and stretching, it might help reduce rebound inflammation and pain.
  Medication.  Take extra antihistamines before you exercise, if you think it will be a trigger, and pain after or during exercise can be an indication that you're triggered.  If you can take Tylenol or NSAIDS before you exercise, that might be helpful.
Somebody on the forum said she'd signed up for a cardiac rehab program, which sounded like a great idea, or even physical therapy (which I've done a couple of times), because insurance pays for it, and it's designed for people who are starting from square one.
Hope that is helpful.  Hope all of you who are hurting have a better day tomorrow!  Joan

archived from original forum  -  starflower author



That happened to me too!  I used to be able to eat small amounts of cheddar in a salad or... my favorite... jalapeno cheese grits (yum!!).  Not anymore.  It gives me insane heartburn.  As much as I love it, I've also stopped eating seafood completely (shrimp, scallops, clams, etc...).  I don't want to get to the point where I have severe reactions even to traces of seafood.  Red Lobster is one of the "safe" places my family goes when we're traveling... I get fish with broccoli and a baked potato.
Heather

archived from original forum   -   deborahw author


When I was in college, I was determined not to gain the freshman 15 (pounds, that is), so I would actually eat tuna and green beans every day for lunch at my sorority. LOL. ALl the other girls would eat the super fattening food made for them by the sorority cooks, and I would walk in with my tuna. No mayo, just tuna in spring water. My friends all would laugh, but I was still able to wear my bikini at the end of the year! Haa! Once I found out that tuna had high mercury levels, I stopped the tuna, though.....Happily, still didn't gain weight. Nope, the weight crept on when I got pregnant with twins. Still trying to get rid of it 10 years later! Uugh! Not giving up, though....