Ready To Scream, Cry, Or Just Lay Down And Not Get Up

[LindaJoy]

Hi, everyone.

Maybe this is not appropriate here. If not, could someone move me to the chit chat forum, please? Thanks.

I am sitting here feeling like there is no end to this miserable life I have, and I just don't want to do this anymore. (No, I'm not suicidal, just feeling absolutely hopeless.)

As you poor people, who have had to listen to me whine for years, know, I have an allergice disease called Eosinophilic Esophagitis and am allergic to all foods. I'm now on an elemental formula. I recently went to Chicago, to an EE specialist, who found that my EE is in remission, yet I'm still having problems. I don't understand that part of this whole thing, and no one has explained it to me. I was diagnosed with Visceral hypersensitivity, gut neuropathy as well as peripheral, and some other little things.

I was put on Bentyl (couldn't tolerate), Nexium (quit, not sure if it was causing problems or not), and Lyrica (down to one pill a day). I itch terribly, especially in my face. No one knows why. My face is so dry, it's feeling like leather. I've never had this before. Benadryl helps, but it increases my already high heart rate.

Now, it just gets better. I have a new PCP, but he won't be in until this Wednesday, so I have no guidance there yet. Last Friday, I was having major itching, so we called my allergist, who is so out of the loop it's not funny. She said she has no anwers for me and quit as my doctor, this after her treating me with meds that wouldn't work, for months, and being told that they're all she had to offer, knew they weren't doing much, but to keep taking them. I'm not too torn up that she quit, since she really didn't help, but I just can't believe her timing and lack of concern. So, we called the docs in Chicago, who put me on the meds, only to be told to find a new doctor as they don't do follow up care, even on patients they put meds on. I couldn't believe it.

Anyway, made it through the weekend okay. Even cleaned my filthy patio yesterday. Itch terribly today, still no allergist in sight (was referred to one four hours away. I didn't have a problem with the distance, but he does, so won't take me.) I tried Zyrtec back in May, for itching, remember? It gave me panic attacks. I don't understand that, either. Why do so many meds cause me nerve problems? I've been psychologically evaluated more times in my life than I've changed underwear, only to be told I'm stable. Then, why are my nerves so touchy and what can I do about it?

Can I just cry a little here?

I'm tired. My husband, bless his heart, is tired. We just bounce from one problem with me to another. My tests are all good, thank goodness. Even my kidneys are doing better. My scopes, both upper and lower, were clean as a whistle. Then, why am I reacting to all things? Why do I feel like I've been hit by a truck most of the time? As a therapist in the hospital in Chicago told me, and I keep in mind, it's not that I can't do this anymore, it's that I don't want to. She is so right. I don't want to live like this anymore. I want help. I've never been healthy, so I don't expect to be able to run marathons, just get through one shopping trip without feeling horrible, or clean one room in my house withouth itching or having my heart go into arrythmias, or feel like I've just run that marathon. I just want to be normal. Be a normal wife to my husband. Yes, I clean when I can, fold laundry, even cook and bake sometimes, but I also don't make love much (sorry if that's graphic for you), cry a lot, and don't go many places besides doctor's offices and hospitals.

Oh, and did I tell you all that I've been told I don't have POTS? I "have some sort of autonomic dysfunction, but not POTS," and I've been told this by several doctors lately. Apparently, I have a really bad vagal nerve problem that my gastric problems are triggering. And, neuropathy for some unknown reason.

I've thought of alternative medicine again, but I've been there already, and it didn't do much. I'm wondering if coming off of all meds after they diagnosed POTS back in 2006 caused an imbalance in my system that I've never gotten over. (I stopped Azmacort, Zoloft and Cardizem.) I'm wondering if all that salt I did didn't cause leaky gut. I'm wondering what has happened to me!!!!!

I'm sorry if this is painful to read. It's painful to write and even more painful to live. I need help to get my and my husband's lives back, and I'm not too proud to ask for it. I just don't know where to go anymore.

If anyone would like to offer suggestions, please feel free. I don't understand how I can feel so bad--I'm still doing that muscle tightening thing after I eat, it's crazy!!--but yet, my tests look so good, which is a good thing, because not too long ago, my tests weren't looking too good.

Thanks for reading, if you made it this far. I'm sorry to be so down. You know what, though? Through all of this, the one good thing that's come of it is that I see how much my husband does love me. He's changed a lot over the years I've been sick. He's really become a caring, unselfish person. I see how very blessed I am to have him. Now, I just want to get better so I can be a better partner to him, to support him like he's supported me, finally enjoy our life together.

Oh, and just to offer, I have had therapy, lots of it, and it really hasn't helped. My last therapist told me I'm already using all of the skills they offer, and I use them really well ("you are really good at coping"), but I'm unwell, and until I can get my body under better control, I'll be sad and angry and frustrated. Just changing my attitude doesn't really help me to genuinely feel better. I guess that's what I'm looking for in this now. Not just acting like things are fine, to have them really be fine.

Thanks, all. I hope this comes across okay. I'm so sad, it's not funny.

Lindajoy

[firewatcher]

Lindajoy, just cry sweetie, if the tears won't cause you hives. You are obviously great at coping if you have for this long and are still with us. Have they attempted to shut down your immune system/allergies with steroids? What do they do to you? Could this be an autoimmune thing instead of an allergic thing? My Dad is a Doctor of pharmacology, and he has told me throughout all my meds that anti-histamines will almost always effect the CNS. That is how they act. Benadryl in particular is active in the CNS, it is an anti-histamine only as a by product of it's action. Allegra is the only anti-histamine with no (or very little) CNS action. Histamine is becoming recognized as a potent neurotransmitter. Have you been checked for systemic mastocytosis? It does not always have the skin component. A new doctor is not a bad thing, a fresh eye can see things better sometimes. Sorry if this is choppy. I wish I could give you a hug. We are here and many of us have shoulders to cry on. Many blessings, prayers and good thoughts your way.

Jennifer

[jdqm]

Lindajoy,

I totally wish i was there to give you a hug, it sounds like you could use one. I know the feeling of wanting this over, yet not meaning suicide. i also feel the same.

The allergy to foods, that is hard. i thought my elimination diet was hard. i am sorry about the formula. are you saying you are still reacting to that? wow thats rough.

about you dear husband, yes isnt it great how they come through. I am happy for you that he is supportive. that sometimes is such an obsticle, that it is good you have the support of someone who cares.

sending love and good well your way

the other Joy

[Maxine]

LindaJoy,

I hope your new PCP can offer a new perspective on things, and offer some help that WORKS. I can relate to some of the same frustrations. I do have a therapist, but I'm not sure if it's all that helpful on some days. There are times when it does help, especially when I'm overwhelmed.

This disorder really sticks, and it's especially rough when you have other health problems added. Could you find a good GI doctor who may be able to look a little deeper into your digestive health issues? I'm sorry your allergist didn't help you. We have a lot of them around here. I can't believe you don't have one closer-----------bummer---- .

My thoughts and prayers go out to you and your husband. I'm glad your husband is supportive. I can only imagine how bad this would be without him.

I feel for you, and hope someone can help you get the help you so deserve.

LOTS OF HUGS

Maxine :0)

[daisy]

LindaJoy -

I can't offer you too much advice but I can offer you my support and prayers.

What you are going through must be just awful. It is so hard when we can't

even take the medications that are supposed to help us.

I hope it helps some to know that we are pulling for you and can relate to your pain.

I hope you get the answers you need with your new Dr.

Take care!

[pat57]

Have they checked your liver functions? If the liver is not clearing toxins from blood you will itch like mad.

[lalalisa]

LindaJoy,

I just wanted to write and say that I'm praying for you and that you're not alone. I'm so sorry that things feel so hopeless right now.

Just writing to let you know that I'm hear and praying for you,

Take care,

Lisa

[mom4cem]

Linda,

I had to hold back the tears reading your post. Wish I could give you a big hug but am sending one the cyber way. It's nice to hear all your tests are coming out good but what the heck is going on! There has to be some doctor out there that won't be stumped by this, that when you see him or her and describe what you are going through they will say"It sounds just like ......" and be able to set you on the path to wellness.

I don't suffer symptoms nearly as bad as most on here, but enough to make me miserable and to have to rely on others way to often for my liking. But I do understand that feeling. Just want to feel well already. You've done your part now it's time to feel "normal".

You are strong, you can read it in your writing. You'll hang on and pull through this all. I'm sure your husband understands that you are giving all that you have, and knows how much you appreciate him and if you could give more you would.

Hang in there sweetie, let out a good scream..it can do wonders.

Hugs..

[LindaJoy]

I feel every one of your hugs. Thank you so much for them. I need them.

Firewatcher: I've been tested for autoimmune disease by several rheumatologists, two at the Cleveland Clinic, one being Dr. Hoffman, who's supposed to be one of the top rheums. in the country. Also, he's a very, very nice man and very caring and compassionate. They found nothing. Fit as a fiddle when it comes to autoimmune disease. Yet, do all autoimmune conditions show on tests, like lupus or arthritis does? I don't know that much about autoimmune.

Also, Firewatcher, thank you for the information on antihistamines. I didn't know that about Allegra, which I'm on with no nervous problems. I always wondered why I can take Allegra without nervousness developing, but got it with all other antihistamines. Are there any other antihistamines that don't affect the nervous system that I could possibly take? How about Singulair?

I've been checked for mastocytosis a few times, with bone and organ tissue, plus with blood tests. Nothing ever shows. My problem seems to be an overabundance of eosinophils at times, and a high IgE level (1600+).

We did find a new allergist, 2+ hours from home, but if she is willing to see me and try to help, we'll do the drive.

Thank you all for the hugs, again. I didn't mean to make anyone cry. I just needed to cry a little on your shoulders, I guess.

Lindajoy

[valliali]

Your post was terribly heartbreaking, but you do sound like an incredibly strong person.

You said that you don't want to fight the fight anymore, but it sure sounds like you do. You have so much love for your husband, and him for you, that it is clear you really do have something special worth batting this day in and day out for. Thank you for sharing that with us because although you were clearly in a moment of despair, your post also had a lot of hope. I too want to be a better partner, a better parent (to my four cats, they are my babies) and a better caregiver to my ill father, and on the days that I want to give up and for it all to be over, these are the things that I also need to remind myself of to keep going.

I am so sorry you are having such a difficult time getting the doctor and treatment you need. I hope that you are able to find the support that you need in your new doctor.

[firewatcher]

I feel every one of your hugs. Thank you so much for them. I need them.

Firewatcher: I've been tested for autoimmune disease by several rheumatologists, two at the Cleveland Clinic, one being Dr. Hoffman, who's supposed to be one of the top rheums. in the country. Also, he's a very, very nice man and very caring and compassionate. They found nothing. Fit as a fiddle when it comes to autoimmune disease. Yet, do all autoimmune conditions show on tests, like lupus or arthritis does? I don't know that much about autoimmune.

Also, Firewatcher, thank you for the information on antihistamines. I didn't know that about Allegra, which I'm on with no nervous problems. I always wondered why I can take Allegra without nervousness developing, but got it with all other antihistamines. Are there any other antihistamines that don't affect the nervous system that I could possibly take? How about Singulair?

I've been checked for mastocytosis a few times, with bone and organ tissue, plus with blood tests. Nothing ever shows. My problem seems to be an overabundance of eosinophils at times, and a high IgE level (1600+).

We did find a new allergist, 2+ hours from home, but if she is willing to see me and try to help, we'll do the drive.

Thank you all for the hugs, again. I didn't mean to make anyone cry. I just needed to cry a little on your shoulders, I guess.

Lindajoy

Lindajoy,

Singulair is a mast cell stabilizer and is now being used to treat allergies as well as asthma. It may be worth a try, but leave that up to your allergist! As to the other antihistamines, as my Dad says:"there are no others that actually work." Is there anything that you are not allergic to food-wise? I know of a boy that can only eat beef, rice and tomatoes. What about rarer foods: lamb, pears, etc. there is a food exclusion diet called rare-foods, mainly lamb and pears, that they use to help diagnose allergies. Just a thought. Good luck!

[firewatcher]

OK, here's a really nutty one: have you been checked for gut parasites? This is from Wikipedia on IgE:

In biology, Immunoglobulin E (IgE) is a class of antibody (or immunoglobulin "isotype") that has only been found in mammals. It plays an important role in allergy, and is especially associated with type 1 hypersensitivity.[1] IgE has also been implicated in immune system responses to most parasitic worms[2] like Schistosoma mansoni, Trichinella spiralis, and Fasciola hepatica,[3][4][5] and may be important during immune defense against certain protozoan parasites such as Plasmodium falciparum.[6]

It would explain the high IgE levels and perhaps your ongoing digestive issues. I have NO idea how they check for parasites.

[LindaJoy]

Valliali, with the love that you have in your heart, obvious in your post, I'm sure you're already an awesome kitty mom and caregiver to your dad. Thanks for supporting me.

Firewatcher, keep going. You'll have me diagnosed in no time!

Unfortunately, I have been checked for parasites, even ones that I could've only gotten by dredging the bottoms of African rivers--no kidding! I think the doctor just wanted to be thorough!

Can I ask what antihistamines your dad thinks do work, or what he has seen prescribed, and thinks works, for allergies? I'm not asking for prescription advice, just curious. I love my pharmacist and depend on her for a lot of medicine information. She knows so much about disease and such because of her profession and knows so much more about meds than my docs do.

My former allergist actually said I could not be experiencing any side effects from gastrocrom because it's not absorbed, even though I was having reactions and went so far as to download the makers of gastrocrom's side effect sheet and take it to her. She still denied it. She also said that I'm allergic to all foods simply because I have bad food allergies. This isn't just bad food allergies, this is a nightmare life!

Thank you, all. I love you guys, I really do.

Linda

[juliegee]

Hi Linda Joy,

I hate that things are so awful right now. If you'd like a second opinion, I would recomend an allergist I just saw at Brigham and Women's in Boston. Her name is Marianna Castelles and she is a masto researcher/doc. She specializes in very difficult cases, will take a detailed history, run her own labs and recommend changes to your treatment. She just DXed me with mast cell activation disorder. Let me know if you want contact info.

Big Hugs-

Julie

[dawn]

Linda Joy,

I cannot tell you how many times I have said "I don't want to do this anymore."

I have had severe symptoms for the past 17 years. Had to quit working. My husband has left twice (I had alot to do with that).

I just cannot accept that I am sick. I do not want to be dependent on others. I want my husband to have a good marriage with

someone who can actually be a partner. (He is athletic). I have no desire to have sex due to my medications.

I totally understand your frustration.

I only keep going by the grace of God. My son (age 26) reminded me that "when we are weak, HE is strong."

I have been angry with God at times. Then I realize that God is always there and knows what is going on.

I have to have faith that all of this is part of his plan, do I understand, absolutely NOT.

Sometimes I feel like I am spinning on a merry-go-round and I just want to get off for a bit. Just a little while.

I too have seen many counselors, psychologists etc. It has not helped.

I think, like so many others, we need to learn to live "just one day at a time." When we think about what we want or future

plans we set ourselves up for disappointment.

My heart goes out to you.

God Bless

Dawn

[lalalisa]

LindaJoy,

I've recently been wondering if the antihistamines I'm taking are making me jittery/anxious as well. (I take them at night and this happens at night)

I also take Singulair which doesn't seem to have any side effects.

Hope you have a better day today,

Lisa

[momofsara]

Lindajoy--Im so sorry you are feeling so down right now. I understand your frustrations. Sara is facing so much stress and depression right now also. She also is experiencing many of the other "bad" feelings mentioned here. As someone else posted she gets mad at God, but only in the sense of exasperation. She draws much of her strength from Him and she knows He has purpose for everything. As human beings its hard to accept things we cant control. Yes, she gets angry and has long periods of crying and depression. Shes about to go through her second divorce----both marriages have disolved mainly because of her declining health. She will be moving back here with her Dad and myself. Hopefully with the proper care, food, and some home PT, we can get her feeling somewhat better over the next months....

Sending best wishes, prayers,and gentle hugs your way

Susan

[masumeh]

Lindajoy,

I've been out of the forum loop for some time, so I just read this post. I hope that you are feeling better now. We never know where relief will come from, but somehow, if we hang on, it comes. Maybe we don't actually get better physically, but something happens to lift us a bit. If we accept it, the good events, then they will ease the burden. I think we often get focused on the health problems, because we're trying desperately to solve them, and we neglect other areas of our life that are meaningful and blessed. It helps to just step back from the health problem and look at the total picture--how we have friends and family who love us, how we're doing OK in other ways, how we have spiritual sources of strength, etc. Because we can never be healthy, it's not fair to focus on that part of our life...it's not fair to the rest of our life or the rest of our identity. Don't know if this helps you, but it sometimes helps me, so thought I'd share. The basic gist is to concentrate on a part of your life that you do have control over, a part that is confidence-building, something meaningful and reaffirming. Just allow yourself to forget the rest for a while...it doesn't need to get solved NOW, not if it's driving you nuts trying to solve it. Give yourself a break from thinking about it.

[ajw4790]

Hi!

Sorry that I am responding late as well. Goodness, it sounds like you have SO much going on! It can be so overwhelming and entirely frustrating to figure all of this out, and try to find just SOME relief! I am not the best with words of wisdom and it seems many others have shared theirs. I think that they all represent what I think and feel.

I hope things are looking at least a little bit up! Give us an update when you are able!