Forums:
Hi everyone,
I haven't been on for a while because I've been pretty much homebound and feeling terrible with this thing. I have been in ttetament for five months (so early days) but can't seem to stabilise yet. As you know, I've had Ic for years - it went into remission after pregnancies but came back with a vengeance after my most recent pregnancy. It has progressed so much that I am not even sure that I have IC - could it be something else? I have constant bladder/pelvic/intestinal pain, but also have whole body symptoms. My brain has been affected so that it feels inflamed/lots of pressure, my thoughts are slow, etc.. My body has been affected with muscle/joint pain/pressure and electric shocks/waves, internal tremors (these are all constant). My question is - has anyone else had these symptoms? I used to have just bladder pain - the rest of me was fine. Now, I won't be able to return to work and am struggling to look after my family. Is this 'normal' for IC or have I been hit particularly badly by it?
I think the fact that my
I think the fact that my other symptoms are worse than my bladder pain is confusing. My biopsy showed 'mild' inflammation and the bladder looked ok. However, my most distressing symptom is my brain symptom - there is a constant pressure in my brain. I don't have flares of anything. I use the loo about 2-3 times per day only - I can't even tell when my bladder is full as my pelvis/whole body is so inflamed. Every single fibre/muscle/sinew in my body is firing all the time so that I have constant tremors in the nerves. There is enormous pressure pressing down on my shoulders. My whole body is inflamed (literally). Can IC do all this, even when bladder symptoms are not that bad? Matia says it is Ic, and it can't be anything else. I agree. However, I only think that it is IC because I had only bladder symptoms before. I really don't understand how IC can do this to the whole body/brain. Has anyone heard of this before (and I don't mean 'brain fog', because I literally can't hold a conversation with people because of the pressure. It feels like a constant physical atmospheric pressure/migraine/hangover - no respite at all.Is this possible?). The final point is that I have never had gut issues - never had IBS, or anything like that.Always had normal periods. Still don't. Normal bowel movements, as always. No food intolerances. I had allergies when younger, but that's it. Also, my sense of taste and smell have been hit, and I don't have any at all. Also, my periods have stopped completely. Can IC do this to people?
It is exactly like that for
It is exactly like that for me! Crazy symptoms throughout the whole body! I'm not functioning at all!
Going to see Matia wednesday! Travelling from Sweden!
I saw a post that Dr.B posted on symptoms. I will see if I can find it again!
Although Inhave read a lot about strange and non bladder symptoms here as well, so I really don't think we should worry!
Most of us are dealing with other symptoms as well, not only the bladder. This is how I see it. If the gut is leaking and the bladder is affected and can not function the way it should, ofcourse it will affect the whole body.
But I think I'm like you. I want to know!!! What is it? What is going on within our body? I have freaked out many times this past year. Going to several doctors, ending up with no answers. The outcome of visiting doctors has been that in my papers it says that it is all in my head. Nice!
But this is not in my head. My husband has the same symptoms, so we are convised it is a bacteria. Have been tested for that, but nothing shows.
I can list all my symtoms for you if you like: in the order that they bither me the most:
- urethra pain, like simething is stuck i there. Swollem and burns.
- vaginal pain. Feels dry and burns, sometimes itch. Servix hurt.
- it feels like someone is standing on my throat. It is awful.
- my rectum hurts. Swollen and like sandpaper. When I go to the bathroom and do no2 it feels like my rectum will fall out.
- my neck and shoulders hurt.
- my ears hurt. Crazy. Like there is something stuck there.
- my legs feel numb and they get swollen and tingling feeling
- tingling feeling in spine as well.
-a warm/inflamednfeeling in my lower back!
- memoryloss
-headaces and sinus is burning
- my eyes hurt and it feels like there is a coating over them. My vision has become worse.
I'm severely depressed and feel awful.
We have a 2 year old girl and we are both feeling like shit (sorry for that) and we struggle taking care of her.
And Im just so afraid that she is sick as well.
Have you seen the website www.Icsuccessonline.com and also read icroadtorecovery? There are quite many success stories! And you will also be able to read about symptoms.
You have only been in treatment for 5 months, and as you say it takes time. What does Matia say?
Hang in there! I think the most important thing is to stay focused and don't give in!
Did you have all these symtoms before you started treatment or has aöl these come after starting the herbs?!
Think of them as dieoff!!!!
Love from sweden
Hi Kristina, I am actually
Hi Kristina,
I am actually relieved that I may have found someone with terrible and multiple Ic symptoms! I have been feeling completely alone, and have been in a very dark place (and I have four kids, a wonderful marriage and wonderful life - well, I had, before all this!). My symptoms have been extremely frightening - I seriously thought I had a mental illness a few weeks ago, my head pressure was that bad. Unliveable with. The symptoms came on during pregnancy (final three weeks) and never left. Don't think it's die-off as symptoms have been constant.
When you met with Dr.B, did
When you met with Dr.B, did she talked about bacteria or yeast in your situation or both?!
She didn't mention either, in
She didn't mention either, in my case, although she did say that there is always inflammation. What od you mean that your husband has similar symptoms? Also, are your symptoms constant? Are you still able to work? Have you been diagnosed with IC?
Vin, what us your email
Vin, what us your email address?! Might be better with email contact. You lnoe, you can also call me if you like! I will send my contact nr in the mail.
Ohhh yes, all of my symptoms are present all at once! I have no idea what a flare is like. Perhaps just incresed symptoms!
I'm in hell!
How long have you had your symptoms?
I know what you mean about lack of flares - those with flares are so lucky!
Hi Vin43, What did you mean
Hi Vin43,
What did you mean when you wrote "those with flares are so lucky!" ?
I am really confused, and wondering if it was a typo.
Hi! I think she means- she is
Hi! I think she means- she is in a continuous "flare" She doesn't get any let-up.
I understand this site is
I understand this site is used to vent, and get help from each other. I love this website.
But when things are said like "those with flares are lucky!" or "I don't know why some of us are struck with not just the "regular" IC." I think that some may find those words very upsetting.
All of us are different. We may experience similar symptoms, and we may experience different symptoms. It does not mean that any of us are lucky, or regular.
This is a very hard disease to deal with, and I don't think anyone just has bladder problems, or flares. Speaking for myself, I have always had crazy issues. I have had so many symptoms. IBS, Fibromyalga, headaches, rectum, colon, intestinal burning, hormonal problems, bladder flares that are extremely painful, and more. The list could go on and on. I am not trying to say that anyone that has not had the symptoms are better off than I am. I know that we are all different, and we have all been through a lot of pain.
We all have an imbalance, and none us are lucky. The only thing positive about this experience for me, is meeting Matia who is helping me heal. and everything I have learned from this experience.
My heart hurts for anyone in pain, and going through this. I will pray for all of you that you get better days, and eventually heal.
From Matia's Dissertation - “Li Dong- Yuan believed that dysfunctions of the Spleen and the Stomach are the root of all imbalances and, therefore, all diseases.”
agreed calieve
I totally agree. Getting into a "who has it worse" competition is totally unproductive.
Hi I do think this is just a
Hi
I do think this is just a sad misunderstanding. And I do not think at all it is about "who has it worst".
I think we are all in a very awful situation in our lives. I don't think it matters what type of pain people has, it is devestating to have pain, wheather it is IC or something else. I know for sure, that I don't wish this upon anyone! ANYONE with ANY sort of pain is UNLUCKY!
Not only are we in pain, we are also in a very fragile state, all of us. We are confused, scared and I believe all of us are on this site, not only to find support, but to find out that we are not alone. We need reasurrance and comfort! I know I do.
I know it is not good to compare with one another, because we are just different, but when I ask tons of questions here, it is about knowing that I'm not alone. As comforting it is to hear that others share the same type of symptoms as I do, I also get sad. No one should have to go trough what we have to go through.
In my case, i'm still confused. I'm one of those persons that needs to know WHAT this is. My head and mind is battling every single minute about trying to figure out what it could be. I have read on sites about IC symptoms, and I'm one of those persons that does not pee that often. So frequency is not my major problem, which I have understood is the first and major symptom of IC. I guess this makes me also reach out to all of you more, asking all my questions and comparing.
Just like Vin43 I have constant symptoms, before even starting the herbs.
I read on the forum everyday, and I do think I have almost covered all posts here now... :)
I read about the diet, people flaring, and finding out things that they can not tolerate etc... I read about peoples die off they get from herbs. Those die off symptoms are things that I'm experiencing witout even starting the protocol. What does that mean?
As a person with constant symptoms it is hard to figure out what cauaes me pain and not.
I read about people that needs to stay away from things even on list 1 bc it causes them flares....and Matia tells me to be aware when I eat what may cause me more pain. This is REALLY hard when being in constant pain. How can I ever tell?!
And I do have to say... I do wish I was a flare type of person so that I could figure this out.
Well, anyway.... That is my view on the whole thing.
I know at least that I wish I had a magic wand and could make all of us well again!
We are all very unlucky and I truly feel sorry for all of us.
Love,
Kristina
Thanks Kristina, I
Thanks Kristina,
I understand what you are saying, this is very hard. Especially in the beginning of treatment, because that is when you feel the worse and you are so limited on what you can eat.
I am the same, I never had frequency. I never had to go urinate every 30 min, I could hold it for 2-3 hours. I just had the burning in my urethra when I did. I also had IBS, and my left side would burn really bad. Now I know that is the small intestine that is hurting. I had a lot of stuff that was going on besides my bladder.
I think that our body is always trying to heal itself anyway and that is why you are feeling the die-off symptoms even though you have not started taking the herbs yet.
Matia has always tried to help allievate my die-off symptoms with the protocol. So she will try to make everything feel more comfortable for you as you go through this process.
Reading the dissertation really explained a lot of what is going on in our body, and why we feel the way we do. Did you get a copy of it?
Good Luck, I know you will start feeling better soon.
I'm SO sorry you're going
I'm SO sorry you're going thru all this. I have had a few long-term episdoes of head pressure at some points, sounds very similar to what you describe. It was a constant pressure and heaviness, except mine was never so terrible as a bad headache/migraine... more irritating maybe than painful, but I haven't had one lately so I may not remember well. (And many years before Matia, after a possible heatstroke?, I was struck for several months w/ constant head pressure (& sometimes bad paIn) along with dizziness -- a doc finally dx'g as 'migraine variant' and prescribed Zoloft/Paxil which magically within a month fixed everything, but perhaps w/ my knowledge now was only pushing it all down?) But I hope it helps you just to know someone else experienced this too. Mine seemed to be directly correlated to extreme heat (I have always been sensitive to extreme heat), and once it'd start up from being out in very hot weather, I get way more sensitive than normal, like even a minute outside in heat is too much.
I have also been dealing for awhile now with severe fibro muscle/joint issues that keep my extremely disabled and homebound so I understand that too, but I'm an aberrant patient & there's more backstory so don't worry/compare us, plus Matia did fix my bladder just before this started. I did a bunch of tests early on (nothing came back) and saw doctors, and still every now and then research other docs/possibilities, but I don't see anything compelling and keep coming back to it must be the IC, as Matia thinks as well, just a very aberrant situation. I think if there's anyone who can fix this stuff, it's Matia. And I'm too nervous to go conventional med route, I think it would only further upset the balance that Matia was able to achieve for me (not just bladder but also in periods & skin better and other things). Matia also says that where Chinese medicine really shines is in these crazy type of situations that regular medicine doesn't know what to do with.
I don't know why some of us are struck with not just the "regular" IC (which was horrid enough by itself) but these all-over body, extreme situations...we seem like crazy specimens to write off, but of course it's oh so very real. I can't imagine you have children to take care of as well, all hats off to you, I really mean it, the fact that you can function at all for so many others when you're majorly hurting yourself is an incredible feat, I couldn't do it. I don't have kids and sadly won't be able to bc of all this -- and I don't know what's worse, not getting to be blessed with any or having them but not able to care for them. And many days I'm struggling just to stay in life altogether and to hold the hope. But I want you to know you're not alone, and these cases of all-over issues definitely do happen, not just to me but others I've read on here, and Matia is in almost all cases able to help. If she helped you w/ your bladder, I can't tell completely from your post?, then maybe you can hold onto that, like if one part of you responded and got better the rest can too. Sometimes she's said that to me too, that when one part of the body responds to her treatment, that shows that the rest can & will respond.
Rocket So sorry to hear that
Rocket
So sorry to hear that you are still struggling with other symptoms! Great to hear though that your bladder is doing great and that Matia was able to help you!
Do you mind share your story?! Your symptoms during IC and your situation now!? I don't understand, did your fibro show up after youncured your bladder?! I have heard that fibro is common while having ic....I don't understand!?
I completely understand if you do not wish to share your story!!!!
I just hope you will feel better soon!
Ladies- I couldn't read and
Ladies- I couldn't read and not respond. My heart is breaking for you. If it means anything, I will lift you up in my prayers for strength and healing. You are very courageous and I admire you.
I agree, Deir,
and also send prayers for you all. I do believe that you are going to get better. I pray this for you and the strength to keep going.
vulvodynia
does anyone here have vulvodyina or vestibulitis? I do not have IC but I have VV. If you do, can you please let me know your experience....
Melis
Hey there-
Honeybee who used to post back in the day had vulvadynia. That's totally something Matia can treat. : )
Hi ladies, I did not mean
Hi ladies,
I did not mean to offend anyone by saying that those with flares are 'lucky'. I have had IC for a long time, but was in remission for 12 years. I had occasional bladder only flares, and I would do anything to get back to that 'life'. This is what I was referring to when I said that those with flares are 'lucky' - for me personally, flares would be much easier to deal with. This time, the Ic has returned 1000x worse - I have so many symptoms and they are constant - no respite at all. I have been incapacitated by this disease in that I am mostly bed bound and will not be able to return to work. I have noticed that people with flares are able to work - I can't. However, I do understand that this disease is horrific in all its manifestations. Personally, I'd prefer flares to continuous symptoms, particularly if they are limited to the bladder only rather than the dozens of symptoms that I currently have. I think I could cope better with the food, etc., as Kristina said, if I had flares. My flares previously were hormone-related so were fairly predictable and fairly easy to cope with. Agree that we are ALL unlucky though.
Hi Vin 43
I am sorry that it is so rough for you - life just sucks sometimes. The thing is - I truly believe that you will get better. Please keep up the faith.
Take Care - I'm sending good thoughts.
Vin, I am so very
sorry. I have been bedridden before (not IC related), and I know how difficult it can be. I do believe that your body can get back to that place of calm that you had before. I send you a big hug and prayers for healing.
Thanks for explaining what
Thanks for explaining what you meant by that Vin43, it makes more sense. I know that you will get better soon. Hang in there =).