Crazy Doctor, Crazy Mil, Making Me Crazy

[Adalaide]

For about two weeks I've been having some pretty serious pain. Partly it's the all over flu-like ache I'm used to now, only worse. Partly it's been other, localized and very severe pain. It started in my left shoulder and was worse with any type of movement, with unexplained periods where it would simply go from really bad to a sharp stabbing pain so bad it would literally take my breath away. Over the past two weeks this localized pain has migrated from my left shoulder and arm to my right hand and forearm, my lower back and both of my legs. There doesn't seem to be any rhyme or reason and not even narcotic painkillers help anymore. After my first appointment my doctor said to come back if it didn't get better in a week or two.

In my oh-so-infinite wisdom when my doctor didn't have any openings yesterday I took the first available appointment with a different doctor. Big mistake. He told me that it wouldn't help me to get me addicted to painkillers. (Really? That's pretty high on my list of no s$#& Sherlock. DUH!) Then he told me what I'm sure all of us have heard a million times but I can't take hearing any more, "I don't know what to tell you, there's just nothing I can do for you." He then explained how I need to see a specialist my insurance won't cover. He had been extremely dismissive with his tone and at this point (totally PMS-y) I couldn't hold it together another moment and started to cry. Now he also put in my records that he wants me referred to a shrink. Obviously being frustrated to the breaking point makes me crazy too. Once I got home and my husband talked some sense into me I was able to get an appointment this afternoon with my doctor. He may not have answers but at least he doesn't treat me like a nutjob.

All this comes after Sunday.... if only Sunday never happened. I slept in pretty much all day, not getting up until almost 5. Over the past few weeks I have taken to washing everything I use, even if it had gone through the dishwasher, because I was getting CC from somewhere. Frustrated and out of energy I got my own plates and bowls. My MIL told my husband that that's fine as long as I do my dishes every single day. I'M THE ONLY ONE IN THE HOUSE WHO HAS DONE ANY DISHES FOR TWO WEEKS. Any dishes meaning I've done mine, my husband's, hers and her deadbeat husband's. I went off the deep end Sunday night. Fine, I'll do my dishes but I'll be damned if I touch another dish in this house. It doesn't seem to matter that she'll let her dishes sit dirty on the countertop for literally a week at a time. (Nasty.) She can't see what's wrong with me therefore I am nothing more than the fat, lazy slob her son married. (He says she doesn't hate me but can't deny she sees me that way, how many fat, lazy slobs do you like?)

So, I get home from the doctor after crying all the way home. Naturally even though I blessedly go days at a time without seeing MIL this is the time she chooses to show herself and pipe up with "what's wrong?" What's wrong? Seriously? I was somehow able to keep from biting her head off and got out a snippy "it doesn't matter" which thankfully she accepted and left. Yes, I am painfully aware of how badly I need out of here, and would love to be able to provide some sort of financial help to myself and my husband other than being a burden but that frankly isn't going to happen as long as I continue to get no answers from doctors.

I guess mostly I needed to vent to people who will understand how very frustrating this is. I know I'm not crazy but that doctor did a really good job yesterday of making me feel like I am. I probably will be crazy soon though if I don't get out of this house.

[IrishHeart]

First of all....I am so sorry you are going through all this.

Secondly, I had a MIL who was very difficult to get along with, despite all my best efforts and kindness towards her so, I know it just makes everything else going on with you all the more complicated to have her "in your face".

Third, I share your deep frustration at being unable to work right now and not feel like I am a "burden" (but I am sure your husband--like mine--does not view you that way at all!!)

You are not "a fat, lazy slob"!! I hope no one in your life has called you this?! If so, shame on them.

Certainly, you should not refer to yourself this way, honey!

Be kind to yourself; you have a serious AI disease you are recovering from!

and, most importantly,

You are NOT crazy. Disregard any medical doctor who tries to pass off your symptoms as being "in your head".

I went through the same BS myself for years before DX and I am thinking your increased pain (if nothing is showing on blood work --like a high SED rate---or on MRIs) is mostly celiac-related. I suffer significant joint/muscle/bone pain and while it IS decreasing with time, less inflammation and physical and massage therapy, I still have problems no one can explain. I have been scoped, prodded, MRId, EMG'd etc. and examined by spine and neuro specialists.

The answer is the same now--it is likely inflammation from Celiac. Give it time.

The doctors will likely give you the catch-all word "fibromyalgia" but there is no cure for that syndrome--Just medications that are not proven 100% effective-- like Lyrica and anti-depressants. Gentle exercise is also recommended.

If you are depressed, that does require attention from a professional. Pain is tiring and taxing (believe me, I know) but it does not mean it is not real and causing you grief.

So here is all I can offer:

(hugs)--and remember this-- do not let MIL get to you.

Living in the same house with others besides your hubs is difficult enough, but you are still recovering from serious illness and you are tired and in pain. Anyone would feel pressure and stress from this circumstance. When someone is in pain (which for me, is all the time) it is not easy to be "cheery" all the time and we are allowed to vent and be out of sorts for awhile--come on here and do it. We GET IT! We just have to avoid wallowing in it.

I have to wonder about CC myself, truthfully, if your pain is new and increased.

Has your doctor done a SED rate or a C-reactive protein test or any tests to rule out other AI inflammatory diseases?

[squirmingitch]

Oh my dear, you have been through the wringer & I feel so bad this is all happening to you. This is the place to vent, let off steam, rant & rave. It's certainly better than holding it all in where it abscesses & poisons you.

I can't give you any better advice than IrishHeart has already proffered. I can send you a million very gentle hugs (((Adalaide))) and let you know there are plenty here who have been where you are now.

[YoloGx]

Oh it is so awful to live with folks who just don't get it and don't want to. And then to have a doctor who is so obtuse!

And all of those I am assuming piles of gluteny dishes?? No wonder you are in pain dear. The CC must be astronomical!! Who knows if they are getting into your food too or not, eh? Just having crumbs all around is way enough by itself...

Before you eat you especially need to make sure you wash your hands always. Maybe set up a system where you can tell if someone has opened up your food or not...

You are so right, get out if you can. Or even set up a cook station in your bedroom or some other spare place if you have to with one of those mini refrigerators and an electric single or double burner.

Good luck! Many of us have been there. Hang in and do look at your options. I think I see a possible move in your future--even if its just temporary to get your bearings and health back.

Bea

[pain*in*my*gut]

Has your doc tested you for any other autoimmune diseases? I was dx with RA about 2 months after my Celiac dx. Your symptoms sound exactly like mine when I am having a flare.

Sorry you are having a rough time! I would definitely get checked out by a rheumatologist.

[Cujy]

I so hear where you are coming from!!!! Ive already posted my experience as of late with doctors...and you sound soooooo like me! I do though have my families full support, my hubby even comes home from work with gluten free treats for me, so thats different.

But I also had a melt down at my doctors office last week!!! I just broke down and blubbered like a baby because now that I have been dx with celiac, EVERYTHING in the world that is or could ever be wrong with me, is the celiac and nothing else!!! Ive had three emerg docs treat me like a complete idiot!!! To the point where I refuse to go back! They even told me that when I had blood in my stool that there never was any!?!? Im so sick of doctors telling me that Im a headcase, no wonder so many of us are dx with depression, if some of these docs did their jobs then we wouldn't have this problem! Rrrrrr.....

Im to the point now where I just don't care anymore, I will live with pain that is in my kidneys and possibly gall bladder pain, and until I actually pee out a kidney or my gall bladder bursts, I refuse to see another doctor.

We gotta stick together, all of us celiacs and apparent headcases! Someday the world will get it!

[Bubba's Mom]

I feel so bad for you!

If you're in so much physical pain you're more likely to be in the category of Celiacs with neuro symptoms? We react more strongly to trace gluten. I've read that it's best for us to omit the gluten-free versions of foods because they can have enough gluten to trigger symptoms. That 20ppm measure is more than we safely tolerate.

Add into the mix a Dr. that's a pompous ass..

I had one tell me she qustioned my Dx because I'm too old. When I asked for a blood test to check my iron levels she told me if I was taking a multivitamin I couldn't be anemic. She did offer to triple my low dose antidepressant and add an extra one to boot though. It was pretty clear I wouldn't get anywhere with her? We need to not go back to these idiots that treat us like whiny complainers! I hope your regular Dr. is more compationate?

It's difficult to live with other people. It doesn't matter how much you like each other..it's just difficult. If your MIL is slacking in the cleaning department, it's not a good fit with a sensitive Celiac.

I know a lot of people look at us and only see the outside. They can't see anything really wrong with us like with some other diseases, so they treat us like "it's all in our heads". You're not alone there.

You may have to take extra measures to keep yourself safe?

I got a box of disposable food service gloves to keep myself safe when handling the gluten eater's dishes around here. You may have to do that too? Lay paper towel down before doing any food prep, and be sure to cover anything you microwave with an upside down glass pie dish or bowl so you don't get cc from heating things up?

Best wishes to you..and I hope you'll be feeling better soon.

(((hugs)))

[dani nero]

Sorry about the way you've been treated. There sadly is nothing we can do about people's lack of understanding.

My whole family is telling me to "drop the whole idea of being gluten intolerant the moment my doctor finds nothing wrong".

People think they know it all and that they have it all figured out. They think they live normal healthy lives because they have the will-power and popper lifestyles, and that we are having problems because we lack that will.

At least we understand sympathize with you. I really wish this wasn't an online place and that I was talking to everyone here face to face.

[Cujy]

That would be nice to have a proper support group but at least this way, we can support each other the world over! Just think of all the people who would be left out of the group because they couldn't get wherever!

Something needs to change in terms of doctors! They need to change. I have been through it with my son and his complete team of docs and with my own docs. They don't think or they don't hope, that you'll research stuff, join an online group or even be informed, and I think when we go in and say hey check this, it just points out that much more their inadequacies! (sp?). They get all pissy I think because they are secretely thinking, "Hey why didn't I think of that??". LOL Hey ya gotta laugh about them, they can't know that we are crying over them!

[Adalaide]

As for CC, I now have all of my own dishes, pots, utensils, everything. I don't use anything in the kitchen that those other people and all their healthy villi go around touching. I've marked everything that is mine with pink stickers, nail polish or duct tape. (Yes, pink duct tape exists!) I have two cupboards and a pantry shelf that are mine. No one touches my stuff. I'm mildly worse than anal retentive about cooking food. I wash my hands, then wash the counters, then wash my hands again and wipe the counters with a gluten free cloth. After washing again I'm finally ready to start! I don't use the dishwasher and cover everything that goes in the microwave. Pretty sure I have CC covered although I am beginning to suspect I'm super sensitive.

I saw my doctor today who admitted the other one can be "blunt" although I'd call it rude. We're working on some way to get me in to see a neurologist to rule out MS, after which we get to start over getting me in to a rheumatologist. He assured me I'm not crazy and said we could try steroids to see if they help with my flare ups for now. At least he isn't telling me my pain is all in my head. He did say he's sure that there's a neurological problem though. I've been tested for RA repeatedly, although I'm awesome at returning negative tests for things I really have. (I've always been a great test taker! )

My MIL though, it would be easier to understand her view of me if she were healthy but she's not. She's been battling cancer for half a decade, so she knows what it's like to be sick and look fine.

Anyway, thank you all for the kind words and hugs. I feel so much better today just knowing I'm not alone. I'm not sure I'd still be sane without all of you.

[squirmingitch]

It doesn't make your situation any better with your MIL but if she's been battling cancer for half a decade then she's doubtless shall we call it "cranky"? We don't feel good because of what we're going through --- imagine her situation. She can't feel good either. And she's probably more than a little jealous of you. You can go gluten-free & heal. While she is at the mercy of something no one really can control --- CANCER. I imagine she's terrified & takes it out on others. Doesn't make it right but makes it somewhat understandable. I'm just saying....

Still, I hope you can get out of that situation very, very soon!

[YoloGx]

Am glad to hear your regular doc is much more supportive. That makes a huge difference.

Am also glad to hear you are very careful in the kitchen etc.

If you rule out CC from standard sources, often its important to look at other possibilities. One is where you get your food supplies from and how they were grown and manufactured. Another direction to look at is to consider the possibility of other sensitivities going on. Which isn't that altogether rare. Many here have problems due to leaky gut syndrome augmented by years of damage from untreated celiac which then can create sensitivity to perhaps just a few or, if your are less lucky, instead a host of foods.

The leaky gut can for example, create a prime situation for things like RA to happen for instance. I came across a great book called "Conquering Arthritis" that you might want to look at. The woman that wrote it overcame her arthritis in large part by successfully managing her diet. For RA it is often advised to stay off animal protein, though fish is usually just fine. Fermented foods too can be a great help--and she has a couple of nice u-tube videos. Barbara Allen I think??I may be mis remembering, but the book should get you there.

For RA and other arthritis, often dairy is out, or anything fried. Lots of fresh juiced veggies can be very healing. I know a bit about this since a good friend of mine is struggling with a similar situation of celiac and potential RA--which is what his mother had. Fortunately so far he is keeping it at bay with diet, supplements and herbs and no drugs. It has not been an easy struggle since until recently he ate quite a bit of chicken.

It is ironic, since I got inspired by his example and went on a kick of making my own sauerkraut--which then pinpointed out my own difficulties with amines from fermented and aged foods! Since sauerkraut has some of the highest amines around--I started getting migraines and hives etc. willy nilly! Just goes to show we are all different. What heals some, may cause difficulties in others. In many ways some of us more sensitive folk need to be like detectives, searching out the relevant clues.

So good luck sleuthing!

[sariesue]

As for CC, I now have all of my own dishes, pots, utensils, everything. I don't use anything in the kitchen that those other people and all their healthy villi go around touching. I've marked everything that is mine with pink stickers, nail polish or duct tape. (Yes, pink duct tape exists!) I have two cupboards and a pantry shelf that are mine. No one touches my stuff. I'm mildly worse than anal retentive about cooking food. I wash my hands, then wash the counters, then wash my hands again and wipe the counters with a gluten free cloth. After washing again I'm finally ready to start! I don't use the dishwasher and cover everything that goes in the microwave. Pretty sure I have CC covered although I am beginning to suspect I'm super sensitive.

I saw my doctor today who admitted the other one can be "blunt" although I'd call it rude. We're working on some way to get me in to see a neurologist to rule out MS, after which we get to start over getting me in to a rheumatologist. He assured me I'm not crazy and said we could try steroids to see if they help with my flare ups for now. At least he isn't telling me my pain is all in my head. He did say he's sure that there's a neurological problem though. I've been tested for RA repeatedly, although I'm awesome at returning negative tests for things I really have. (I've always been a great test taker! )

My MIL though, it would be easier to understand her view of me if she were healthy but she's not. She's been battling cancer for half a decade, so she knows what it's like to be sick and look fine.

Anyway, thank you all for the kind words and hugs. I feel so much better today just knowing I'm not alone. I'm not sure I'd still be sane without all of you.

There should be no reason why your dr has to work to get you in to see a neurologist. It's really a simple process, the doctor either writes/calls in a referal first OR you can just call and make an appointment. If it's problems with your insurance not covering the spesific dr your gp wants you to see call your insurance and see what neurologists accept their insurance in their area. If for some bizzare reason your insurance won't cover ANY neurologist then you may have to suck it up and pay out of pocket. Which does suck, but it's better than being in pain with no relief because you chose not to see a dr who could help you find relief due to money.

[IrishHeart]

I've been tested for RA repeatedly, although I'm awesome at returning negative tests for things I really have. (I've always been a great test taker! )

My MIL though, it would be easier to understand her view of me if she were healthy but she's not. She's been battling cancer for half a decade, so she knows what it's like to be sick and look fine.

You are in my boat--a "false NEGATIVE" tester on all fronts. Makes one wonder about the accuracy of testing....

As for your MIL, well, I have to agree with SQUIRMING ITCH...she may be an unhappy camper for many reasons (her own illness and discomfort) -- not that it justifies her unkindness towards you--not at all--but perhaps, just explains it? That is what I figured out with my own MIL. She was just miserable for other reasons and I was a joyful person who made her son happy. ah well.I tried.

I hope you find what is causing your pain, hon. I have been to 3 neuros, 3 rheumies, a spine specialist, 3 pain management docs and

had every test imaginable. They all say the same thing "I don't know", here take this anti-depressant, this anti-anxiety med and these pain meds and good luck.

I take none of them. I rehab my muscles myself with a massage therapist and a physical therapist. My GI doc agrees that it may just take time to get the strength back and eradicate the pain.

I am thinking all good thoughts for you and hoping you get relief soon. Constant pain is no picnic.