Forums:
Hey friends,
Ok so I've only been in treatment officially for a few months and I'm wondering if any of you have symptoms other than the obvious bladder crud. After I had my baby in June, my body went completely haywire and I've had lots of crazy things going on in my body besides bladder pain. Whereas when I first got IC when I was pregnant it was only bladder problems. I would so love if you all would share your "other" symptoms. I'm just so frustrated because i feel like I have something else going on but I went to a couple of Drs and had basic bloodwork and brain MRI that showed nothing. Should I be tested for Lymes? I live in AZ but I don't think Lyme disease is real prevalent here, however my husband is a hunter and goes up north a ton and brings all sorts of wilderness back with him on his clothes, gear, etc.. I just don't get the sudden neuro symptoms after the baby? Maybe my IC sisters could offer up some advice/support?
Here are my other symptoms:
feeling like I'm on a boat or heads in a fishbowl
Anxiety
dizziness off and on
weird pulsating tingling spots on my left leg
tingling spots on my upper back muscles along with stiffness
Everytime I take a deep breath my hands tingle up
very poor circulation, limbs fall asleep a lot
after walking my feet tingle up and freak out
headaches
muscle weakness esp on left side
Heaviness in eyes
Those are my main ones. I feel so trapped inside this body and I don't know what to do. All of these are intermittent, they come and go which is so weird?
Help! What would you guys do??
Hmm I wonder why this isn't
Hmm I wonder why this isn't showing on the sidebar?
Hi Minnie,
Hi Minnie,
I haven't started treatment yet so I'm sure I'm not the most reassuring voice, however, I can say that my symtpoms are much more comprehensive than just bladder symptoms. However, from what I understand of Dr. Brizman's approach, that makes total sense. IC does not just affect the bladder. The bladder is simply one symptom (one of the more annoying ones) representing a more global disfunction in the body.
For each person it is different, but I share many of the symptoms you listed. Dizziness is a big one for me, and poor circulation as well. I find both of these symptoms to be incredibly strange and draining... sometimes when I wake up it feels like I've woken up after having been bludgeoned with a medieval club... my limbs feel like they haven't had oxygen in them for hours. If I move too quickly sometimes I get very dizzy.
It's all related. When I was researching my symptoms, a few months before I was told I might have IC, I read that vaginal pain often occurs when the body has run out of ways to expel toxins. If we're having these issues in our bladder/pelvis/vagina whatever else, it means something is off somewhere else and causing the pain, which makes it perfectly logical that we are experiencing other symptoms.
Other symptoms I have are acid reflux, phlegm, fatigue, mood swings, skin sensitivities, hot flashes, acne, and stomach and digestive issues. I know they're all passengars of the same boat though so I think addressing the roots of the problem will take care of everything :)
As for getting tested... if you have good insurance and it will put your mind at rest and is uninvasive... why not?
Hope this is helpful or reassuring in some way.
Feel well!
Hannah
Bi-lateral knee pain that
Bi-lateral knee pain that prevents me from standing for any length of time or walking more than a block. It is a joint arthritis. I am so frustrated tonight and really despairing about it. Today is the anniversary of the 5th month when it started. Bladder is 85-90 percent better and so are food allergies. Still dealing with sinus congestion caused by seasonal pollen. But really, I JUST WANT TO BE ABLE TO MOVE SO BADLY. I can deal with the rest. Thanks for listening. Bonnie
Ive had numbness and tingling
Ive had numbness and tingling in my legs since being diagnosed. The doctor s kept thinking I had MS, but all my brain scans came back. The tingling has gotten better in the last year just a little bit on my left leg now snd then. I just started treatment 3 months ago. I also had eye floaters too
ythose are gone now. Currently I have hip pain that came out
of the blue and dreaded urgency. I wish I had this forum tw
years ago it would of saved me so much grief and anxiety. I truly think I had ptsd because of all the hospital stays, test and spinal taps etc. It took me a awhile, but I finally stopped thinking I had some strange disease that was going to kill me. I was so relieved to find Dr. B and this forum and know that im not alone in this. There so any people that have heaked I truly believe we'll get there. Take care feel free to email me anytime
Amina
I've had a lot of the
I've had a lot of the symptoms you mentioned. I've also had joint pain, ears being plugged up, body feeling freezing cold, etc. The stuff you are experiencing is temporary and normal. It is your immune system at work.
Have you mentioned your symptoms to Dr. B? She can reassure you and sometimes change your protocol to help you be more comfortable.
I asked Dr B about MS. She
I asked Dr B about MS. She said that only one of her patients had a confirmed case of MS. The rest with similar symptoms went through brain scans, etc. with negative results. Most people got better, never had MS.
I asked Dr. Matia about the
I asked Dr. Matia about the tingling sensation and numbness along the spine, buttom and legs she explained that the lymphatic system is swollen and pushing against the nerves that is causing this sensations.
It will pass in time. I have had those symptoms on and off for a while and most of the time they are gone, but it is part of the cleaning and healing process. At the moment I am having some muscle pain mainly shoulder and arms, a lot of bloating and painfull stomach again my body is detoxing a lot after stopping al the painkillers and amytriptiline.
But on the bright side I am finally seeing some improvement on the bladder and the vaginal irritation.
Wow! Thank you for all of
Wow! Thank you for all of your responses. This is such an intimidating disease, i never know what to think and have a hard time relaxing through it and trusting the process. Each response I get from you is like a little dose of courage to help get me through. I am truly grateful for all of you.
Hannah- your voice is more reassuring than you think! I agree with you on the dizziness and poor circulation being strange and draining. It causes me lots of anxiety on top of everything else. Blah. Thank you for sharing what you've researched and your symptoms. Are you going to be starting treatment soon?
Bonnie- Big hug to you. I'm so sorry you are dealing with this knee joint crap. It will pass, I just know it will. Your body must be hard at work trying to clear more junk out. I'm glad you have Dr. B to help you through this. Maybe you could grab some good novels to start? I like reading trilogys. Or if you have Netflix, they have tons of good TV Series on there you could start up. My personal favorite is Downton Abbey :)
Amina- Its such a drag isnt it?! It makes you worry about tons of other things.. like we need anything else to worry about on top of our bladders. I also think I got PTSD after my C-Section with my daughter because of the extreme pain I was in.. not from the c-section, but my bladder, and other things that happened there like spinal headaches. I had intense anxiety also, ugh it was terrible. I actually went to therapy to deal with all of it. So yeah I can relate to the PTSD. I'm glad you found Dr B and are on a better path for your health. Thank you for responding Amina and for the positive words :)
Lisa Ann- Thank you for reminding me that my immune system is at work. I needed to hear those words. I forget that I'm sick sometimes. It sounds stupid with all of the pain and discomforts I'm in. I think I just keep thinking it will magically dissapear and that this was all just a bad dream. But I'm grateful for the process I'm going through to get my health back while I'm young.
blondy- Thank you for sharing what Dr B told you. Its always nice to hear what she says to others, since our time with her is so limited. I hope you are doing well :)
Anneke- Thank you so much for explaining what Dr B said about the numbess and tingling. Its so weird how our bodies respond to illness. I'm glad you were able to stop the painkillers, that is a good sign. I hope the detoxing discomforts pass for you quickly. That is great news that your bladder and vaginal irriations have gone down! I see you are from the Netherlands. My husbands dads side of the family originates from there. His grandparents actually served a church mission over there and used to visit a lot when they were younger. Our last name is very Dutch, and no one can ever pronounce it!
Hi everyone:)
Hi everyone:)
I'm the patient with MS. I was diagnosed when I was 26 & have had it for 13 years. I have always done alternative medicine & had it beautifully managed before I was thrown the curveball of IC after my 3rd baby. Life has never been boring for me haha. It has been confusing with some of my ic symptoms because they mirror MS so much. I too have some numbness & tingling & back hip & tailbone pain & dizziness. I'm very excited to see how this treatment helps my MS too if it does in any way at all. For me that bladder pain is my most difficult symptom & for me all the rest of what is happening to my body, I can handle.
Amy
Amybarbara thank you for
Amybarbara thank you for sharing ;) Im so glad you found Dr B!
Minnie, I have never had
Minnie, I have never had those symptoms that you mentioned, until starting with Dr. B. Now I have nearly all of them. Can't be coincidence!! All different branches of the IC tree. I know my body is clearing the imbalance. Did you read her dissertation? Latency and compensation is a little confusing to read, but I read it twice and it explains this stuff pretty well...
If we don't excel at health, the only other option is disease.
Mimi,
Mimi,
I have read some if the dissertation but I need to go through it again for sure. Thanks for the reminder!
Christine, are you on list 4?
Christine, are you on list 4?
I pretty much eat from List 5
I pretty much eat from List 5. No foods seem to bother me anymore. It seems mostly to be hormonal now with problems around ovulation and my period.
Here are/were my other health
Here are/were my other health problems:
- cold hands and feet
- constant sore throat (starting to go away)
- watery eyes in the morning
- bleeding gums (gone)
- IBS (improved greatly)
- TMJ
- sensitivity to bright light (improving)
- low blood pressure (improving)
- hypoglycemia (completely gone)
- sore knees (almost gone)
Thanks again for sharing
Thanks again for sharing ladies