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Hi all the lovely forum members,
I have been having really a hard time lately and today I just melted, so I decided that it might be a good time to reach out. I am almost 8 months in and while I am doing my best, I seem to be one of the stubborn cases, and I really wonder if I can be helped at all.
Approximately 2 months ago, I had really bad reaction to goldenseal. I had horrible hives all over my body, even on my scalp, and I had random mouth/fingers swelling and had a crazy suffocating feeling. Like a severe allergy (I will not take goldenseal again). That lasted a few days and was really scary. Then, after it stopped, I still felt really bad. Developed even more severe flu-like symptoms and my other sesamoid started to hurt (I have a broken sesamoid bone - pretty bizzarre thing - it is a bone under a big toe of a foot, it happenned in treatment, noone knows how... Or why. It is almost impossible to walk with that). So after the goldenseal ordeal my other sesamoid started to hurt too, and then my feet start to tingle, but so much that I have to move my legs around all the time - so restless leg syndrome I guess. I have a very hard time to fall asleep, because me feet tingle and hurt and all the tendons feel stretched like crazy. If this was not enough, after adding in vit. D3 I started serious arthritis issues out of the blue. I just do not get it - how this can happen to a 27 years old? My knees hurt so much that every step feels like I was tearing the tissue. Also there is probably a liquid in them, and when I bend them, they pop and crack so loud that it scares even people around me. It really feels as if I did damage to my joints by walking and I have to bite my mouth because of the pain when I walk just a few meters. Standing and washing the dishes got impossible. All the muscles on my legs are stiff and sore - even at night - but it is not an annoying soreness that lets you think you will ever be OK again, it is a torment really, and I do think I am a tough person speaking about pain. It has been like this 2 months and I just lost my hope.
Unfortunately, my bladder/urethra is still the same, almost no improvement too - it is sometimes calmer a tiny bit but I honestly attribute that to the fact that I am not active at all. I know it used to be worse after moving/excercise, which is just impossible now. So, I have nothing to stick up to. Last whole month, I had a horrible yeast infection and nothing could stop it, then finally my period has started and now I am afraid it is going to return as it ends. LLast three months, I am getting yeast infection after every period. I just do not get it - I have never had such problems.
I have tons of other issues - like dry eyes, floaters getting worse, really bad acne (I had no great skin to begin with, so...) the flu-like craziness all the time (had that before treatment but not all the time), but the problems with my feet and legs are beyond my own ability to cope. It is so extremely painful that sometimes I even forget about my bladder for a while, and the whole thing with my sesamoids, tendons and now joints makes me fear that I am going to end up on a wheelchair. To be honest, I feel like I need one now. I am practically homebound and have a hard time to keep my job.
I guess all I need is some hope - is there anybody who has/had such problems, which are probably aggravated by treatment? I am so, so sad and hopeless, that I have doubts if this treatment is the right thing for me, although I have no plan B - what is going to happen to me, if the only person in this world who specializes on this illness in a natural way can not help me? I would like to ask Matia a lot of things, but you know how it is during the appointment - too little time to understand what the heck is going on with our bodies sometimes... I would love to pay for an extra appointment (do not know if that is even possible?) but can not afford it right now.
Sorry for such a novel, I know noone can do all the work for me - I work hard myself, I am in psychotherapy, trying to change my mental patterns etc., but I have lost more than 2 years already and got only worse during last months. My brain tells me there is no better way than this treatment, it all makes sense, but my heart is a scared rabbit - maybe I can not be fixed? Being homebound and in so much pain, losing ability to walk to my own mailbox brings dark thoughts.
Thank you for any input!!!
Aya
Aya- I don't have a lot of
Aya- I don't have a lot of time right now but wanted to reply- I am so sorry you are struggling so much. That sounds just terrible.
I am not close to as severe as you sound, but i have had negative reactions to the treatmetn as well. I feel in my case, it is cleansing and detoxing that is making me worse. i developed neck pain last June so we are talking 14 months of neck pain. This has kept me from even thinking about dancing or much exercise at all. My bladder symptoms got worse for many many months with the herbs and probiotics.
The good news and i hope this helps you- At 14 months, I finally I feel like I started to turn a corner. Now at 15 monthsI finally feel like I am getting stronger and have many more longer spans of feeling nearly normal (not my neck yet) I feel like now this will be exponential recovery- I hope!!! That being said- I've had a rougher week this past week but I really think overall I am getting there. So, you may be like me and have a difficult time getting started. It has been very hard mentally to think about how long I was NOT feeling any better but now that it seems to be starting I feel more hope.
(((((((HUG))))))))) HAng in there.
Glad to hear you are finally
Glad to hear you are finally seeing some progress, it's nice to hear!
heard that
Aya-
So sorry that you're having such a tough time. All of what you post sounds ghasty--but unfortunately it seems to be super common. I'm in year 5 of treatment, and I feel like that first year I really felt like I was dying the majority of the time. I had such crazy symptoms including stroke symptoms that I went to the emergency room for, heart attack symptoms etc etc. As for weird swelling foot reactions, my foot totally swelled for a few days this summer for no reason. I recommend that you email matia often, as often as this stuff crops up. However, if she doesn't seem worried, then as odd as it sounds, you should push through. A lot of people take a year or a little more to notice symptoms relief. Don't worry Aya!!!!
Mrs A had the same problems
Mrs A had the same problems with vitamin D. Write her, she is great. Don't give up. your die off symptoms sound like lots of others I have read about. Hang in there and email Matia more frequently now. She will be there for you.
Hi Aya. First off, I never
Hi Aya. First off, I never usually write on this.. but your post spoke to me and I feel like you need all the encouragement that is possible. I am so sorry the hell this disease is causing you. I am here to give you a sense of hope. I know how a few words can just motivate you to stick with the treatment and I hope I can give you that.
I am 37 (38 Oct. 7th) and have been sick since I just turned 31 back in 2005. I too have been through hell and finally found Matia, which I have been in treatment for over 2 years now. I had a lot of crazy symptoms.. all different kinds of symptoms and most days felt terrible. i do feel we have to get worse before we get better. It took me a long time to turn around and I still have a ways to go but the important thing is that I am slllloooowly turning. At a snails pace I am getting better. DO not GIVE UP! You can do this. It has taken me a long time for my symtoms to get better.. most people I feel moved quicker than me, however I was so sick. I have a long history of living on asthma and allergy meds, shots, birth control pill, poor diet, and drank alcohol through all my 20s.
I figure it took me a long time to get in this mess.. it will take awhile to undo. As far as your body overreacting to the goldenseal.. i use to get that way from water, milk, etc.. so scary.. however our bodies are on such high alert. Your body overtime will calm down. Please feel free to contact me on my email if you have any other ?? Matia is the right path and will help you along your journey. You can do this. Time... it just takes time :)
Hello Aya Just thinking of
Hello Aya
Just thinking of you. I am in treatment for 7 months now and also developing a worsening of symptoms then before treatment. But I also know that the body is changeble. What is bad right now can be well again in time. I had a tingling sensation down the left side of my spine for many weeks that is totally gone right now, I also had very bad pain and pressure around the tailbone area (like an elephant was standing on it) now gone as well. Still struggling with bad bladder pain and paiin in the vulva area (which I actually developted in treatment) but I understand that that is one of the places toxins are pushed out. I have had IC for 20 years after that a remission of 5 years and now back again
In those years I have seen many of the ugly faces of IC but the body is capable of becomming well again. Altough at the moment I literally have to turn to these words myself again, just don't give up. I know in my head we are on the right path with this treatment ( just need to convicnce the rest of my body though) We will become well again it just takes time. Aya I know how you feel being trapped in such a very dark place but please don't give up there will be better times for all of us. Time is on our side.
Hi all,
I am sorry for my late response. I had my classic post-period igraine, which lasted 3 days again and I was so so bad and nauseated that I could not even drink water... I have never had it so bad in my life, so needless to say, I am scared. I had to take paracetamol which probably made my bladder even worse and vulvodynia came back (it comes and goes but never was my main issue, but..). I am so, so grateful for all your responses. This is so hard for me because before treatment, I was kinda self-treating myself with food and herbs (both different than Matia uses) and it was helping me slightly, although it did not cure me obviously. But I had some good days and was able to go hiking, cross-country skiing and running some days... Some days were bad, but not even close to as bad as my "good days" are now. I was able to keep it like that for 1,5 yr - bad, having IC, but functional. And able to enjoy life a bit, sometimes. Now I am debilitated and have brown scars (post-inflammatory pigment scars - the herbs made me oversensitive to the sun which resulted in a blister rash - like a bad toxic sunburn) all over my belly and legs - these will probably never go away, at least not by anything natural. And weird reactios to the herbs, and nothing, really none of my symptoms is better, I just gained more and more painful and scary ones durig the treatment. I do know that it might be detoxing, yes - and I sure hope for that - but it is such a struggle while this costs me everything I have - I just pay for rent, food and treatment, which is the biggest part - and yet find myself in this position. I hate seeing myself crying like a baby while I KNOW that there are some people who are much worse than I am, and still are able to keep some hope. I do feel guilty for that - there are blessings in my life, many of them, but no matter what I do, they seem to be behind a wall of glass - so visible and obvious, but I am not able to touch them. And I think I am starting to blame my body for not cooperating - which is of course unhealthy and does not serve me. It is so hard to wait when it will finally turn, while I am getting worse during the last 8 months instead of better.
Your posts helped me to change perspective, and I am really grateful for that. I will read it all over again, whenever I feel down, to remind me how gentle, open, giving and strong a human being can be. So, maybe this will take many many years, and as long as I am able to keep it financially (that is my biggest fear really) I will keep going.
Deir: Thank you, I must admit I thought about you often, as we both seem to struggle with worsening symptoms in treatment... And I often see myself in your posts, and understand very well how one can struggle with coping while getting worse(and everybody else seems to get better in some ways). I always wanted to ask - sorry if too personal - do you think that the fact that you are not getting better could be at least partially caused by nursing? (I think you are still... right?) I have read some stories on the internet how someone´s IC got better after hormones settled when that people stopped breastfeeding... Just a thought.
Researchnerd: Thanks, I know, some of that stuff seems common, but from what I have read here, most of people get better in SOME area (like better hair/nails, immune system, some symptom better or gone, very little things sometimes) - unfortunately I am the one who got worse in every single thing it seems - from my period to migraines and fatique to bladder/urethra stuff, and while in treatment, I became homebound - and I need my job... so even more stress-more symptoms as I feel it - vicious circle. I was ready for an unpleasant die-off, and I guess I can go through many odd stuff as long as I am able to take care of myself and earn money. I am trying to find a way to cope with this - mentally, spiritually and materially:) I just do not feel like myself - all my energy is gone&the pain drives me crazy. You are right that bizzare things happen during treatment - I am just shocked how BAD I can actually feel - like if this even wasn´t my body anymore. When I wake up in the morning, I just wish it all ends. I know, I must keep goin´. Ugh...
ptrerzwife: Thank you for your kind words. I really wish this all was a die-off. Who knows! I am in contact with Matia and she is still changing something, but I do not respond - at least it seems like that. I really pray for the slightest change to the better so that I gain some strenght to do this. Your improvements inspire me, too!
Colleen: Thank you for being so open to me and for sharing your experience, especially while you do not post here normally! Your ost gave me hoe and a sense of calmness (although I had to read it like 50 times to achieve that):). it means so much to me, thanks again. It is great that you feel you are healing. I am so so happy for you! Thank you for offering me to contact you if I needed that - it means a lot.
Anneke: Greetigs from the Czech Republic to the Netherlands!:) Thank you for sharing your story of illness/remission and hope with me... I am truly amazed how strong you are, giving me hope in this situation. Yes time... is really a relative thing.:) Hope it is on my side, too... good to hear that from someone like you, Anneke!!
I often fear this illness has made me a crazy cynical non-believer (in anything and anyone):). And yet the people here make me cry because of their strenght and humanity and willingness to help. THANK YOU.
dear Aya, please do not feel
dear Aya,
please do not feel quilty about taking painkillers and do not hate yourself for being in tears. this illnes is taking a heavy toll on us and our family.Like going through life constantly carrying a heavy blanket which we can't shake off. IC can take away almost everything that makes life worth living except for that one little thing that precious light inside every one of us. No matter what this light will always shine and lead us the way.
Don't let IC take us down and don't feel quilty about feeling sad, deepdown inside we are very strong souls, just living in a sick body. But also living with an opportunity to get our health back. Although I am still in a lot of pain I strongly believe that this is our road to recovery. I have been in the very dark places in the past but also seen 5 years of no symptoms at all with only the diet.
I did not know about Matia back then and decided one day that I wanted to lose some weight. I started the South Beach diet (no sugar, no bad carbs ect) and after some time my symptoms were gone. While the year before going on the diet my urologist spoke about removing my bladder. So I know the body is capable of healing especially now we are in treatment with someone who knows so much about this ilness and will guide us through this all. Please have faith and one day this heavy blanket will be taken away from us.
Hi Aya- Real quick- I really
Hi Aya-
Real quick- I really don't think nursing is affecting me at this point. I am sure some people are affected since it is about hormiones. Nursing a 2.5 yr old is totally different from a newborn. IN the beginning, your hormones are working overtime but when you are at this point- nursing 1x a day for 10 minutes sometimes not at all- it really isn't all that much on the hormones. In fact, once periods return, the breastfeeding has little affect on hormones. My IC showed up the WEEK I got my period back when Nora was 10 months old. So I think it was the opposite for me. I actually have a feeling that if I were to get pregnant and nurse a newborn, I'd go into remission for a while. I have no proof for this just a hunch.
It is a good question and believe me, I have asked Matia. She said no too. I was almost wishing she had said yes because it would have given me something to cling to!
i wouldn't stop anyway until Nora is ready. I am trying to give her all the help I can! Remember, I am not close to as severe as many people. I can live my life relatively normally- well...for someone with IC!!!
I don't want anyone reading this to think they should stop breastfeeding or not breastfeed! If you can breastfeed,it is so important for the health of the baby's gut.
You are an amazingly strong and courageous woman. This is so hard. I am thinking of you and sending you serious positive energy across the ocean. Hang in there ((((HUG))))
Abbie and I are praying
for you dear! I had a lot of muscle pain since April, but it is getting better now. Dr. B will help you through this very difficult time, and you will get on the other side of this! I am so glad you took that long trip to come here, and some day you will be one of the forum members encouraging others. I wish I could write a longer letter, but I am at the library, and so far none of the letters that I've written on the forum in the past couple of months have been posted. I am not sure why, but I will keep praying for your healing. I always thank God that you came to stay with us, you are such a special woman. :) Love and hugs sent to you from all of us.
HI Aya
I have just read your post, so sorry not to have read it earlier but so glad so many have and it is helping you to keep going. My heart went out to you when reading your post because I know the desperation and hopelessness that this condition can bring and only those of us who have experienced/are experiencing it truly understand how scary and soul destroying it can be especially when we are really suffering.
Like Dier after 15 months I finally felt I had turned a corner but like Dier it is still up and down, I too am in the throws of a really bad couple of weeks, bladder screaming at me, chroinc fatigue and muscle and joint ache/pain etc etc. Not sure why but as Matia says there must be a reason and I am trying to figure out the trigger. This will pass and you will turn a corner and having read about all the horrific sympoms you have it really does sound like you are having a major clear out which hopefully will ease for you soon. I agree with everyone when they say to keep emailing Matia, she has always said to me when I have said I don't like to bother her, to email when I need her....so please email her when you need her.
I agree with you that it can be very scary when you speak to many that are progressing so well and especially when they have been in treatment less time than you, I have experience those feelings often and been plauged with the thought that may be this will not work for me. Dr Brizman though is so in tune with this disease and everything that I read, research tells me that this is the right way, bur it is the aligning of our thoughts and emotions, that is perhaps one of the most challenging things we face, especially when we have been in alot of discomfort and pain for what seems like an endless time.
Your comments about seeing the blessings in life as though through glass is a wonderful analogy and I completely understand it, I often feel that I am like an observer rather than a participant in life. But on my better days I feel like I can reach out and almost touch life again, which we will, we will be participants again, when our bodies and balanced and healed. As I am coming up to 2 years in treatment I asked Dr Brizman if it is unusual to take such a long time and she said it is common, many of her patients take a long time so please do not feel that this will not work for you, it sounds as though it is working but you are having a really hard time of it. You WILL turn a corner and you WILL be reaching out your hands to others having reached the peace and joy of recovery, which is my dearest wish for all of us, to reach recovery and taste the sweetness of being well like we have never done before.....we will certainly never take it for granted once acheived will we.
Sending my warmest affection and a great big hug.