I also have Fibromyalgia, Chronic fatigue, Gluten intolerance (I'm not willing to do the biopsy for celiac), rheumatoid arthritis, hypermobility (they actually told me I am too flexible, didn't think that was a problem) and I know there are others but those are the big ones.
I have been checked and DON"T have MS or thyroid issues.
I'm so frustrated about the weight gain, I have put on 30 pounds in the last year due to meds, I'm off those meds now but the weight won't go away. I have been told NOT to jog or do any "jumping" activities - 1-is that a normal restriction and 2- what else can I do for aerobic type excersize. My hubby keeps wanting to get me on a bike. UMMMM balance issues? He can't seem to get that, he just thinks I'm just not being careful.
Okay there is a ton of verbal vomit in this post. I'll stop for now...
I was diagnosed with hypermobility long before I was diagnosed with CM and SM. I had know idea there was any relation. Wow it is interesting to learn what we all have in common. Thanks for sharing, Tiffany
I am so sorry to hear that you are battling so many health problems at once! I will be praying for you!
My neurosurgeon instructed me to avoid heavy impact exercise activities, and no really "wild" things like bungee jumping, roller coasters, and the like. I am allowed to run if I feel up to it, but stop if I begin to have problems. I would highly suggest something in water. I have taken water aerobics and water walking classes. They are fantastic! My mother, who has MS, has been swearing by that as her main source of exercise for years! She has a lot of weight problems from years of medications as well. It has helped her lose some weight, and tone her muscles. Maybe a stationary bike might be an option too. I do that sometimes when I want to work out, but don't feel up to something really extreme.
I’ve been diagnosed with Pseudotumor Cerebri as of a week ago, which was 11 weeks after my decompression surgery. I was told many conditions can run with Chiari because of the spinal fluid and braun being affected. I too struggle with weight gain from meds and lack of exercise due to severe balance issues and my high csf pressure makes my upper body want to explode. For now I have been curing out pop and watching the sweets and I go for a 30 minute walk (at a speed that doesn’t cause the pressure problems) 4 times a week. Little things will help, our bodies have and are going through alot it will take some time. Best of luck!
Were you diagnosed with hypermobility or are they calling it Ehlers Danlos Syndrome? I know many other Chiarians that have EDS which is another form of hypermobility. I don't really know why, but there is a connection. Many of us also suffer from chronic fatigue and fibromyalgia. Since Chiari is a neurological disorder, it can, and often does effect the major systems in our bodies. Some have digestive, kidney, stomach issues and many have the symptoms that you are describing. Unfortunately sometimes the medications that make our symptoms lessen, also have side effects such as weight gain. Can you walk on a treadmill? You can always hold on when walking on a treadmill and that way you wouldn't have to worry about uneven ground like walking outside. If you are walking in a gym, there would also be other people around in case of an emergency or you needed someone's assistance. Hang in there! The more I learn about Chiari, the more I see connections with other illnesses and symptoms.
