Thank you all for your warm welcome.
Chiari is made worse by being dormant, stress,
being overweight,wrong foods, etc. I have found moderate exercise
modulates the pain symptoms without drugs. I hope this
helps someone. Its simple but effective.
Hi Bobby,
Welcome to the Greatest Chiari Discussion Group & a Wonderful Group of People. I am very interested in learning more about your natural approach to Chiari symptoms. At first I was insulted by your post. If you read my bio, you will see I have had a difficult situation with Chiari & additional Cranial Nerve Compression. Before I became ill I worked out with a trainer daily & ran or walked 4 miles a day. I also grew up playing all sports & swimming & diving competitively. Now I can't even walk through the Grocery store, much less workout in anyway. I have met with trainers & several PT's & Spine Specialists that have all said they were sorry but couldn't help me. Most Chiarians cannot workout. We struggle just to make it through the day. I have also tried nutritionists and went off dairy and wheat and night shade plants. I know you want to share what works for you with others, but please learn more about Chiarians pre and post op. Everyone on this site would love to follow your recommendations & most of us have tried every option under the sun to feel better. I guess I am insulted. My Cervical Spine was rebuilt ....I will never be able to work again, be the Mother and wife I was. Can you understand the heartache everyone feels here? We have all lost so much. I know several parents would jump through hoops if feeling better was that easy for their children. I have read your Bio...I think you should spend some time reading others. We have been living in hell & exercise and a healthy diet is not anyone's magic pill. Chiarians aren't lazy sloths, that eat poorly. We are adults and children and parents & loved ones that would literally move the Earth to feel better. Please don't try to tell us it's as easy as working out & eating healthy and all will be well. Sorry not well....effective. I know you think I am horrible, but if you walked one day in my shoes you would understand my anger. You would understand how much my daughter would give to have her Mother back. How much parents would give to have healthy children. In the morning if I lay really still for a second.....I can feel what it was like before Chiari.....and then it's gone & reality steps in. Please just learn who you are posting to before you post. It can hurt people more than help.
Tracy Z.
Tracy Z.
Bobby,
First off welcome!
I do understand Tracy's frustration and feeling insulted. Tracy and I (and many others here) share alot of the same history and symptoms. After suffering and pushing through for so many years it's hard to hear "just exercise".
Everyone here has their own pains and issues. I'm sure you didn't mean for your post to be insulting, just take in to consideration everyone's own personal struggles with Chiari. Some are wors than others, but we all have deep compassion for one another.
I am glad that exercise is working well for you. I work out as regularly. For many of us we are very limited to certain exercises and we fell worse after working out, not better. I eat absolutely no processed foods and am gluten, dairy and soy free(I have Celiac disease). There are days I can't even lift my head off my pillow, much less work out. I think we all do the best we an with the issues we have.
Tracy made a wonderful suggestion...read some Bio's and Qand A's.
I did answer your blog about if anyone has taken the "natural route" by not taking meds. It is an interesting question, although I doubt there are many out there. I'm curious to here some answers. As I said on the blog, you probably want to post questions or info on the "discussion" page.
Don't let this discourage you from communicating with us! We are here to support and inform!
Good luck!
Monique
Hi Bobby...
I am so happy that your Chiari is easily controlled with diet and exercise...you are not the norm, unfortunately. I am sure you are grateful for your situation , being so mild....a healthy lifestyle is always key with any condition.
I do have a question for you...Do you have any symptoms that effect your daily life? See, some folks can walk around with a 10mm herniation and have zero symptoms....then there are folks like me ...5-6mm herniation and end up with drop foot, visual issues, tachicardia, ect....Chiari presents itself differently to every person.
Again, I am so happy for you ..that you do not need meds nor surgery.
I must say, my Chiari is not as severe as some members here and I have not had to have surgery thank god, but I do suffer from Chiari. Up until last year no one could really tell me why my hands, feet and head would go numb and why I would get headaches so bad it felt like someone was beating me in the back of the head with a baseball bat and so much pressure I thought my head was going to explode. I do lead a very busy active life. I work full-time, working on my Master’s Degree, a highly active member of my community, I run a youth soccer club, I bowl every Sunday night on a bowling league and I try to get to the gym at least 3 nights per week. I am a wife and a mother, I would say I am FAR from dormant. With all this being said, I still have days where my Chiari is so bad, I can’t care for myself let alone get to the gym. The one thing Dr.'s or someone like yourself neglects to learn is that some exercise can make your Chiari worse. I joined crossfit gym and lifting weights and exercising hard can actually make your condition worse… The reason you think this might have helped you is because your Chiari is not as bad as others. I understand you are trying to help, but I agree with the others, i feel like you just called me a fat, unhealthy, lazy person and I think that is the far from the truth.
I'm disappointed how this was received! How could some of you be so mean to this person. Why can't you just be happy this is helping them, why be offended! Bobby was doing what I thought this was for, to be helpful and it was met with some mean comments. I just joined because I was in much need of some people who understand my pain, but if this is the overall feeling here then its not the uplifting place for people to gather and help each other I thought it was.
Bobby,
First of all, I am so glad that your natural approach is working for you:) I wish we could all be that lucky! I really don’t think you meant to insult anyone…You shared what has worked for you in hopes of helping others…For that, Thank you:) On the other hand, I do understand why some of us were offended by your post. Many of us were told these same things by doctors, friends, and family before we were properly diagnosed. Even with a correct diagnosis, we still hear it! Prior to the car accident that brought on my Chiari and Syringomyelia symptoms, I lived a very healthy and active lifestyle. I would give anything to be able to workout, but sadly like many here, it’s just not possible. Initially, I tried to workout and push through the pain, but it made my pain/symptoms worse not better. I started a healthy eating plan a couple months ago and I’ve lost 39.2 lbs:) It hasn’t improved my pain and other symptoms, but I’m still doing it to better my overall health. My Brother-in-Law is a Personal Trainer and he believes that regular exercise will solve any problem. I can’t stand for more than 10 minutes without excruciating pain and loss of feeling in my legs. He doesn’t understand why I can’t work through this. That is one of the many reasons why I come here for support from my fellow Chiarians. Since we suffer from an invisable illness, many think we are faking it or just plain lazy. So, even though I don’t think you meant to, you struck a nerve. Please don’t be discouraged! We really do appreciate what you were trying to do.
Crystal
I understand your approach, and I'm trying to avoid medications as much as possible myself, but for me, the exercise definitely isn't helping. For me, exercise actually seems to be making mine worse. As for "wrong foods", I'm curious if you have any specifics that have been triggers for you. I haven't found any food related triggers for me yet, but it seems I find something new about this all the time. I'd really love it if there were a way to help regulate this with diet, and less medication!
Please don't be scared off, or offended, by the other posts in response to this. I don't think anyone wanted to offend you or scare you off, but something we all have to realize sometimes is that we all deal with this common beast in different ways. ChiariWife called us "snowflakes" because while we all have this in common, we are all still very different. I'm sure we all have different things that help us, and I am grateful you shared what helps you. I hope it reaches the attention of someone else it will help.
In the defense of the others that were offended, I was upset by your phrasing initally myself. To use a blanket phrase like "Chiari is made worse by" wasn't exactly fair. Everyone deals with this differently. Those triggers are not the same for everyone. For many of us, being still (dormant) is the best way to avoid an increase in pain or other symptoms.
HI Bobby.
Im glad that you have found what works for you. I too take a more natural approach but that is because for so many years I tried all of the meds that are out there and not one of them worked for me. I live on Imitrex injections and spend so much money on them it is ridiculous. That is honestly the only med that I have found that I can tolerate and that does anything for me. Going on a decompression table at a Chiros office and getting neck massages once a week help me so much. But there are also times that it doesnt. I, just like everyone one here, suffer from so many different, weird things and they seem to switch all the time. But we all have to try everything out there to see what works for us. I have realized that we all have different things that work. If there was one thing that worked for all, what blessing that would be. So, I am so glad that this works for you. Queen Vic is very right when she says that triggers are not the same for everyone. Everyone does deal with it differently and maybe someone will read your post and it might help them. Im amazed when I personally read about meds that have helped so many people yet they didnt help me or I just couldnt tolerate them enough to take them. Honestly, it ticks me off that the meds will work for someone and did nothing for me. But then I have to remind myself that what I do that relieves some of my problems may not help others.
I need to correct myself. There is one med that I have found that makes me feel ssssooo good. Its a medral dose pack (sp?) Its basically a steroid. Even though all of my drs agree that it will make you feel better, anyone with any kind of migraine, they will not allow me to have it very often because of other side effects. That makes me want to laugh. Who cares about the other side effects if I can feel wonderful, I ask. So, I get those when I have really bad allergy attacks and boy do I love it when I am on those. I have tried to find a natural steroid but was told they don't have those. All of my family knows that if they get that prescription, and they don't use it all, they give it to me. I would love to see a study done on that med in relationship to headaches and blood flow because it apparently opens the veins so that blood can flow better. Anyway, that is the only med that I do take, when I can get it. Haha
Raine,
I am very glad Bobby's eating & exercise plan is working for her. I also hope it helps others. You also have an open invitation to read everyone's Bio's and responses to posts and our posts. You will find we are not mean. I am just very honest. This is a wonderful discussion group. Everyone is at a different stage in their Chiari experience. I apologize if I offended you or Bobby, but please try to understand where we are coming from. I would be the first one to be there for you or Bobby if you needed anything, so would everyone else that posted on this discussion. Please don't judge this Discussion Group by one post. I also ask you to reread the posts here and feel what we are experiencing. Please try to feel why I was insulted.
Raine said:
I'm disappointed how this was received! How could some of you be so mean to this person. Why can't you just be happy this is helping them, why be offended! Bobby was doing what I thought this was for, to be helpful and it was met with some mean comments. I just joined because I was in much need of some people who understand my pain, but if this is the overall feeling here then its not the uplifting place for people to gather and help each other I thought it was.I
i wish just eating right helped. i have to make sure i eat and drink fiber and marlix just to feel better. and it gets tiring. and theres times i'm to tired to exercise.
Mizti,
I have Celiac Disease so I take alot of fiber and Mirilax too ....I feel for you becuase it's miserable, huh?
I have recently discoverd a great source of fiber that is so easy to drink. I actually make a breakfast smoothie (1/2 cup almond milk, 1/2 cup water, 1 cup frozen bluberries, 1 banana and 4 Tbsp Hemp Fiber, 2 cups Kale)
The Hemp Fiber has 14 grams of fiber and 11 grams of protein per serving. The brand is Manitoba Harvest and the product is Hemp Pro Fiber. It's so much easier than drinking Metamucil all day, YUCK! You can mix in all kinds of things and even use it in place of flour to bake. Check out their website.
Let me know if you try it!
Monique XXXXXX
I completely agree with you on some of your points. It's very difficult to not become dormant when you have an illness such as CM and it seems that pain rules your life. I am also new to this forum and I will say that that regardless to the fact you didn't read any bios beforehand. Your post didn't say you want all CMs to get out there and make these changes in their lives. You just stated a fact. CM or not, people this is still a fact. I was dx 12 years ago with symptoms progressively getting worse and worse! I can't work anymore. My kids and hubby are affected by my illness because I don't get out of bed most days (except to take time to go to the gym). I do take meds and I have been known to take a pain pill just to push myself through my workout. When I exercise it relieves stress, it may give me a worse headache temporarily, but it makes my heart stronger. And really who does want to hear about eating healthier...that has nothing to do with CM. But we all should do it. It will make us healthier. So I'm just saying don't take Bobby's suggestions so personally. She wasn't lashing out at anyone. I am sure she heard this from doctors, too. Heaven's knows I did. It just took my liver getting really screwed up and a big slap in the head from God that said, "Hey you better get your crap together and be active in a way that you can be."
If anyone is interested in getting more active...This is a Chiari Group on MedHelp and there is currently a disscussion on getting a list of Chiari safe Dr approved exercises. I think it is going up and getting added to on Wednesdays.
My goal here was not to offend any more people, but hopefully to open your minds a little further past allowing this illness to completely run your life. I know it's hard not to allow it to do that, but it just naturally does it. You have to fight back. Even in baby steps! I may be getting in to area where I need to read bios now, but I know how my fight has been...not easy peasy!! I will not let this win!!!
MedHelp's group discussion on exercise: http://www.medhelp.org/posts/Chiari-Malformation/WEDNESDAYS-WEIGHT-IN-WORKSHOP/show/1620952
hi april
thanks for the link
gotta check it out
have a great week end everyone
seems like a lot of work, but if i can find all the stuff i might try it
mochico-Monique said:
Mizti,
I have Celiac Disease so I take alot of fiber and Mirilax too ....I feel for you becuase it's miserable, huh?
I have recently discoverd a great source of fiber that is so easy to drink. I actually make a breakfast smoothie (1/2 cup almond milk, 1/2 cup water, 1 cup frozen bluberries, 1 banana and 4 Tbsp Hemp Fiber, 2 cups Kale)
The Hemp Fiber has 14 grams of fiber and 11 grams of protein per serving. The brand is Manitoba Harvest and the product is Hemp Pro Fiber. It's so much easier than drinking Metamucil all day, YUCK! You can mix in all kinds of things and even use it in place of flour to bake. Check out their website.
Let me know if you try it!
Monique XXXXXX