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The past few months have been really difficult for me and I feel very alone in this whole journey. In May my arms started hurting very badly. I thought it was from a new phone and how much I was playing with it, but it still has not gone away. I went to a few doctors becaues of the arm pain and they only wanted to say it was MS. I never got the MRI done though because of Matia saying not to because of the dye I would have to drink, but I still am having the arm pain. It's very mysterious and comes and goes. I also started having a finger tremor last month and it is progressively getting worse, basically lasting all day now. It's very unsettling. I know if I go back to the round of doctors they will want to test for MS and Parkinson's and I just REALLY don't think I should go that route just yet. I am just really scared, confused, pissed, and I just need some IC sister love right now. I have been cheating on the diet tremendously and I really really really really really don't want to anymore! I started out SO strong, so determined.... and I just want that back. I don't want to cheat anymore but now just feel too weak. The more my finger tremors as I type this the more I want sugar. The more my arms ache as I sit here, the more I want a cigarette or a drink or something. I don't know how I got to this point but I just want it to STOP.
That's my vent. Sorry if I seem pathetic! I just am so sick of it all and knew you guys would understand.
I'm sorry your having such a
I'm sorry your having such a hard time. I'm not sure what to say. I really don't think or atleast I hope you don't have MS. Do Dr's really think you might? I thought it started out more as tingling and numbness in the extremities. I know it's hard to stay strong with the diet but know that by doing so you will start to feel better and maybe what you are experiencing is some weird muscle die off that you just need to get through. Just know your not alone and we're all here for you.
I feel like I do not have the
I feel like I do not have the classic signs of MS at all. I think that western medicine just doesn't have any other idea and that's all they can think of. So I basically stopped going to the doctors. I feel so much better after writing my lil rant that I think I am going to be much better now... much better with the cheaing. For some reason, it makes me feel better that someone knows my struggles. I guess it was therapeutic for me... because I don't try to explain this to my friends. They are great people, but this is all kinda mind boggling for them - like it used to be for me. Thanks Christine for your support. I appreciate it!
Oh (((((((Lee lee)))))))) So
Oh (((((((Lee lee)))))))) So sorry to hear this. I think your instinct is telling you it isn't MS and it is just a particularly bad extended die off event. That just stinks. You'll get back on the wagon. You can do it. Hang in there.
LeeLee, I completely
LeeLee,
I completely sympathize with what you are saying about feeling alone on this journey. I have a wonderful support, however, its just not the same as actually going through it. This has been harder than I thought it would be. For example.... after working so hard at keeping fresh produce in the house, washing it, reading every label when I grocery shop, worrying that I accidentally will ingest something that will make me ill, not feeling well, having to pee, you know it all... my husband comes home sits down with a big piece of pumpkin pie (my favorite) and a big cup of hazelnut coffee....and I thought... I can't even imagine being able to just nonchalantly eat a favorite food without worrying of the pain to follow. This disease has changed me so much that I view each decision in a day very differently than before.
As for the arm pain. I am sure it is very scary. Dr.B and I have not found the right combo for slowing my heart rate yet and it has been a real challenge. I reiterate this issue not to vent (although I am sure I will need a turn soon:) rather, I have brought it up to let you know you are NOT alone in this scary IC world or serious imbalances and pain. I am cheering for you and hope you feel better soon.
Please keep us updated,
Katie
Hi LeeLee, I am so sorry to
Hi LeeLee,
I am so sorry to hear you've been going through such difficult time. I am not familiar with MS symptoms but it sounds like one of the weird die-off symptoms. I had a weird pinkie finger pain on/off for a while, which i thought had nothing to do with IC but Matia said that area is related to smaller intestine, which i was focusing on at the time with new probiotics. All these unusual symptoms like sensitivity to light, occasional sore throats, ear ringing, foggy heads...i would have trouble believing all related to bladder a yr ago. Now i know it is, that's why chinese medicine is so amazing, nothing is blk or white as in western medicine. I hope Matia can help you through this without having to go through any other tests.
Leelee
Your so not alone... I get what you are saying. Things can get really discouraging, and fast. I've been dealing with a ton of joint pain... my knees ache so bad I can hardly walk down stairs somedays. I know it has to be die off. Though even saying that makes me mad when I'm just fed up with all this.
You need to get some agave stuff in the house. I don't know if you do, but if you are really struggling with cheating at some point, cheat with that. Or something fruit sweetened. It is SO much more gentle on your body.
Hang in there, and take ONE day at a time.
Treats
I agree with Hopeful. Best to have some 'treats' in the cupboard so when u have one of those moments of temptation u can't resist, there is a healthy 'treat' to eat/drink instead. I don't know what list ur on. As Hopeful says maybe agave sweetened something or very weak coffee? Zucchini muffins toasted with butter?
I had a finger tremor for a while but it went away. Drs are keen to throw labels at people. It makes u anxious when u have these symptoms and of course anxiety makes the symptoms worse - so it can be a vicious cycle.
I'm sorry to hear you're
I'm sorry to hear you're feeling so scared and alone right now- I think we've all been there! When I first went to a naturopath over a year ago, she wanted me to get tests done to rule out MS and I remember how scary that felt. It's terrifying to feel like your body is going out of control on multiple levels and it's exhausting to be so vigilant about what little you can do to contribute to your overall wellbeing. I'm always asking myself when some new symptom comes up if I should just watch it, go to an MD, email Matia, etc. Sometimes it seems like our brains are our own worst enemy, always trying to solve the problem and making up stories about what could be wrong. And then talking to MDs seems to just heighten the anxiety because of the model they work from of naming the problem even when they really don't know.
Lately I've been having pain in my right lower abdomen, which is something I had when I had an ovarian cyst 3 years ago. And I've been terrified that it's back and I can't imagine dealing with that on top of the IC. So I've cried, freaked out, been gloomy, and then sort of started to just watch the pain and to send more love to my body. I know this sounds a little airy-fairy, but it's really helped my mind relax and just be where I am instead of plowing ahead with all the "what-ifs". Of course, tomorrow I have a date with the gyno, so we'll see how well I can keep up the love!
I think the biggest thing I've found from this whole IC experience is that if you need help and let people know, there's so much love out there that people want to give. And it may not fix the problem, but it certainly changes how it feels to be uncertain and in pain. I hope you get some answers and relief soon.