Test after Test with no answers...Swelling and itching..

Discussion in 'Fibromyalgia Main Forum' started by SherylD, Sep 21, 2006.

  1. SherylD

    SherylD Guest

    I have about had it with going to the doctor!!

    I have had itching for a very long time...years...Now in the last few months I have had swelling with it..

    I went to an allergist a couple months ago, he was suppose to do blood testing and ended up just doing skin testing...I was not happy about this..

    I seem to react to just about everything I eat...so I was thinking I was allergic to some foods..

    Well nothing came up on my skin testing...so last week my pcp did some blood testing..just the basic foods and I went today for the results...nothing, everything was normal.

    I know something is wrong..I just can't figure it out..And I have been really watching my diet now for almost a year...I am getting real sick and tired of it..

    And I am really not liking my dr.

    Today she told me that she just don't know what to tell me...She thinks I should go to Mayos to try to get some answers..I don't have the money to go there..

    But when I tell her things she don't even look at it..Say if my ears are bothering me...she don't even look in them...I always end up in tears before I leave...

    I mostly get upset cuz she makes me feel like I am lying and I'm just crazy...THen I think of the money I pay her for nothing!

    Sorry for venting, but I am so upset and frustrated and I know you all understand...

    Anyone have any ideas or thoughts on this????

  2. zenouchy

    zenouchy Member


    So sorry you are having a hard time. I wish I could give you the right answers and make it go away! Your symptoms are a little vague. You didn't say what kind of doc you are seeing....is it a dermatologist? I wish I could give good suggestions, but I'm not sure I can. I wonder if trying a dermatologist would help since you are having itching and swelling? (I know, seems like a big "DUH".) If you're already seeing one, maybe try a different one and get a recommendation on one that is really skilled and will listen to your concerns and treat you like a valuable human being and not brush you aside.

    I would also strongly consider ANOTHER allergist and before paying good money, get reassurance that he/she will do blood testing. Testing just for basic foods isn't going to help you obviously if you are sensitive to a lot of foods. Again, you are needing a doc that REALLY listens and will do more for you than just the basics. SHOOT. I know It's so frustrating and draining (financially draining too!) to have to see doc after doc with no answers. I send you gobs of patience and hugs to get through what has to be a very trying situation. I pray that answers come for you very soon. Let me know how it goes.

    All the best,

  3. kriket

    kriket New Member

    Sounds like something is going on and your doctor sounds frustrated as well. I don't have any suggestions, but I sure hope sooner than later you can figure out what is going on.

    I have been so frustrated with doctors too, in the past and sometimes it is as though, they don't have a clue and can do nothing to help you. I have been there, in tears before too with doctors.

    I finally had my regular doctor refer me to someone, and I have been with him every since. Sounds like you have had a time of it lately. I sure hope things improve and they can find out what you are allergic to. Keep us posted.
  4. jaltair

    jaltair New Member

    I'm not understanding what type of doctor you are seeing, if the doctor is a GP for Family Practice, the problems may be out of the doc's league.

    My internist got to the point where she actually told my husband and I that she simply didn't know what to do to help me. This was after many tests, and so many symptoms. This was after I took my husband with me so that I could really get her attention. This was after my husband told her that what had been going on with me was really not at all like anything previously experienced by me prior to the time I was diagnosed with the FMS / CFS.

    It was not until my rheumatologist ran tests after tests that my lupus was diangosed. When my internist found out I had lupus, she told me, "well that explains everything." Why she didn't run the tests that showed the lupus I'll never understand.

    I believe that many who have FMS have some type of autoimmune disorder that can't be defined, and it is very frustrating to all the doctors who want to give you or me a label to explain what's going on. Sometimes, that simply can't happen.
  5. SherylD

    SherylD Guest

    First of all thanks for responding...It's nice just to have people listen when you are frustrated..And I know you guys understand all to well...

    This Doctor is a Family Dr...I have been going to her for over a year now with no help what so ever...I seem to forget what she does to me and then after some time passes I go back again...I told my husband not to let me go back again, to remind me I get nowhere...

    My itching started years ago...Would come and go. I itch everywhere...Inside my nose, ears...My armpits and crooks of my legs are the worse..If I don't take an antihistamine I get hives...No, there is no rash...It just gets red if I itch..

    I think it is something internal not like lotions or anything...Cuz I can eat something and an with in 10 min. sometimes I am itching and can feel my legs and hands start to swell...or the itching can come an hour after I have something..My mouth can get funny, lips can burn.

    The swelling gets bad...mostly face, hands, legs and feet...Also my stomach swells...It's very uncomfortable..I have been gaining 8 lbs with my period the last few months..I can gain and lose 5 lbs in a day..

    I went to an allergist for some testing, but that is who just did the skin testing....So this family dr. decided to do some blood testing...Well all she did was the usual stuff...Wheat, milk, corn, peanut..That kind of stuff. I think they needed to be a whole more tested...My allergist was going to do whatever I wanted tested...I think he just forgot about it by the time I got there, and I was just kinda in shock that he was going to do it. So I didn't say anything...My fault there I think..

    I think I need chemicals tested too...

    The only answer she had was to take a different antihistamine...I was taking claritin and her and the allergist want me to try Zyrtec...I tried it last night for the first time...I don't seem to feel any different today, but it might take time..

    I already have changed everything...I use only fragrant free stuff, natural toothpaste, aveno lotion,eat mostly organic, no prepackaged foods, all that stuff...And if I don't I can tell...This week I ran out of my dish soap, plus eating things I hadn't for a while, and painting some things...I woke up with my glands swollen and my head all plugged up and had a hard time breathing...plus the itching which gets to almost a numb feeling..Then the pain and fatigue, dizziness get worse too..

    After being exposed to all this stuff my face gets bright red, feels like it is on fire after I get out of the shower..So do my ears...I think it is just from the heat of the water..

    The only things I have come up with that could be a possibility...Are yeast, like one of you mentioned...and or...Salt. Those are the only 2 things that I can think could be in all the things I eat. Or sulfites??? As you can tell, I don't really know..LOL

    But I have been treating for yeast for almost a year...I know it can take a while...

    The funny thing is...I avoid salt..I slip sometimes, but I don't salt anything...I only drink water...I eat a few plain chips once in a while...But when she look at my lab work yesterday my sodium was high!! I told her I don't eat salt...she just looked at me like I was crazy. She says it is in things you don't think it's in, like pop. I told her I only drink water...She just says, well. I told my husband that and he just laughed cuz he know I don't eat hardly any salt..

    I was thinking of calling my allergist and seeing if he would do the testing he was suppose to do before...and just make my list all over again..

    Sorry I went on and on...Hopfully I answered some of your questions...Any more ideas, I can't take this anymore!!

    [This Message was Edited on 09/22/2006]
    [This Message was Edited on 09/22/2006]
  6. carebelle

    carebelle New Member

    I had something like this years ago .I was told I had mercury poison . They tried everything to figure it out finely a Homeopathy Doctor treated me .
    Mine were like mosquito bites all over and itched horrible
    I was treated with a homeopathy drug that cost 4 dollars and they went away.I think its somewhere in my threads if you put in mercury poison.

    They think it can be from fillings in your teeth or even from eating fish.

    I wish you well ,let us know what you find out.
  7. findmind

    findmind New Member

    sheryl, a friend told me a long time ago when I had terrible itching and hives where I scratched, and bumps that itched, that it was my liver!

    Well long story short...it was! Had liver enzymes elevated, had liver biopsy, was diagnosed with non-alcoholic fatty liver disease, called NASH.

    I took milk thistle regularly for 6 months and the itching went away, and now I grab the bottle if it comes back.

    Just had labs done yesterday to test liver now...hope its still under control!

    Maybe just a trial of a good milk thistle product? If it helps, stop them and be sure to have dr. test you. Many many people with CFS have gotten NASH.

    Think eating would make itching happen if your liver is not processing things correctly, so it may not be a specific product or food that causes it.

    Sure hope you find out what is causing this terrible and frightening symptom! Let us know, ok?

  8. Marta608

    Marta608 Member

    ....which you may already have had but do you use any body moisturizers or oils? Sometimes we can become allergic to them even after we've used one for a while - or the manufacturer may begin to include a new ingredient. And good idea about changing your shampoo if you shower and wash your hair which most of us do!

    Just for kicks (it doesn't take much for us), why not take some warm baths with baking soda in them. wash your hair in the kitchen sink (you can scrub it afterward) and apply no body moisturizer - assuming you do now. Change your bathsoap too, to Ivory. It could even be something added by the water treatment plant to the water or something like different salt in your water if you use a softener.

    Meanwhile it sounds as if your doctor is (almost) as frustrated as you are!

    Good luck!

    PS. Does your lovely yard still look so good?

    [This Message was Edited on 09/22/2006]
  9. SherylD

    SherylD Guest

    Carebelle, No, I have never been tested for murcury poisoning...Maybe something I should consider...I do have a mouth full of fillings..And I have been thinking of going to a homeopathy dr. just for another opinion..

    Findmind, I have had my liver function tested and it is all fine...But I do take a milk thistle everyday...Have been for a few months now..I plan to keep taking it, I don't think it can hurt. Thanks..

    marta608...My garden is out of control...I call it my jungle!..thanks for asking..I have changed almost everything...I would not be able to use ivory, I can't take the smell...I was just trying to use ivory dish soap and that was a no...I have to have fragrant free. I use a calendula toothpaste...aveno lotion...vanicream body soap...frag. and dye free laundry soap..borax to clean with...vinigar for my windows...

    As you can see I have changed alot already...The only things I haven't changed are my shampoo and conditioners...The only one I have found without a lot of stuff in them is baby shampoo and they still have fragrance...

    This is really tuff to stick with...I was eating really good and then was not really feeling better...Was feeling somewhat better but then just gave up and started eating a few other things, big mistake...

    I guess you don't really see the progress til you feel really bad again..

    I was just reading on sulfite sensitivity...It can cause body tissue swelling...I wonder if that's not some of my swelling??? And sulfited are in everything..drugs, supplements, foods, shampoos, soaps, LOTS of course..

    Thanks to you all for your help!

  10. SherylD

    SherylD Guest

  11. eeyoreblue02

    eeyoreblue02 Member

    I had never thought of mercury, as someone else suggested, but you really should be tested for that. I have heard of other people seeing huge changes in their lives once they had fillings removed from their teeth.

    You already know that I want you to see another doctor. I have seen so much improvement in myself since I have been going to a homeopathic clinic.

    I was wondering if perhaps you got worse after you and your husband redid your son's room? Did anything there trigger these symptoms?

    Thinking of you,

  12. Loveyame

    Loveyame New Member

    Find a doctor that is a kinesiologist.

    He or she will be able to take your meds and check to see if you are having a unfavorable reaction to them.

    He/she can also do some hands on tests to tell if you are allergic to certain foods without taking a blood test.

    When I get ahold of a med that reacts to my body badly I swell up like a toad and I itch.

    Same way with some foods. The allergy doctors did not help me to find out this information.

    The kinesiologist did the finding!!!!
  13. twitcher

    twitcher New Member

    I like my family doctor but she told me straight from the start, she wishes she could help me but my problems are way beyond her scope of practice. If I had a general problem I would see her. I would not see her for this complicated neuro/fibro problem I have. I'm glad she was honest instead of wasting my time and money. Maybe she just really doesn't know. She should tell you this though.
  14. ilovecats94

    ilovecats94 New Member

    What supplements are you talking and what meds? I have had problems with several supplements I was taking and had to quit.

    It may be due to one of the above. Good luck!

  15. SherylD

    SherylD Guest

    Thanks so much for all of your help and suggestions...

    Linda...I know you want me to see another doctor..and I am going to. I have decided to go ahead and make an apt. with my SIL doctor who is a medical doctor but specializes in homeopathy...I might be able to help...as far as the mercury...my mouth is full of fillings and I am to go this week to get 2 more! So that is something I should check into..

    lincamp ...You sound like you have been through exactly what I am dealing with with your daughter...How is she today??? Did you figure out a lot of stuff?? What kinds of things does she use...like soap, shampoo??I will definetly look for that book..Thanks..

    loveyame ... I have never heard of a kinesiologist...What do they specialize in???

    twitcher...Thanks...I think they last time I was there when she told me I should just go to Mayos was her way of telling my it was out of her league...

    ilovecats94....This is the only stuff I take...I get up and take a table spoon of all natural, organic, preservative free aloe vera...and a table spoon of fresh organic lemon juice...Then I take a probiotic that is a powder from Needs...The only other ingred. in that is rice starch......Then I take a barley greens supplement that is 100% barley nothing added..

    I was taking a liver support...but I stopped it about a week ago...It has a few other ingred. that is was wondering about...I think I do feel a little better since I stopped it...My swelling has went down, but I have really been watching what I eat too...So not sure there..

    I have changed all my soaps, shampoo, conditioner..etc. this week..Started yesterday...I bought some aubrey organics...Dont' really like the shampoo but it was really expensive so I am going to still use it for awhile..

    I was looking at my soap, it was vanicream unsented...it had BHT in it...

    I do think I have a problem with salt...I know someone mentioned silicone...which is silica..right?? I tried to eat some chips again the other day and my gums and mouth are so sore and I only ate a few...But I think I said before..I wonder about sulfites...So if I eat chips I could be getting the silica and sultites...

    I will let you all know if I get into this doctor...My SIL said it is a 2 month wait to see him..

    Thanks for all you help everyone!!


  16. woofmom

    woofmom New Member

    Do you have an air purifier?
  17. SherylD

    SherylD Guest

    No...I don't

    What are you thinking???
  18. zenouchy

    zenouchy Member

    Dear Sheryl,

    First of all, I send you gobs of love, patience and hugs to get through what has to be a very frustrating situation. Your docs are obviously confused and don't know how to help. Now, here is my completely objective opinion, keeping in mind that I'm not a doc, but what I would try to do if I were walking in your shoes. It's just what I would do, and if it doesn't work for you, then take it with a grain of salt.

    It sounds like (as you know) that you are allergic to several things. And to switch several toiletries at the same time is unfortunately only going to compound the problem because you could be switching to several more things that you could potentially be allergic to without being able to isolate which one thing you are allergic to (or without knowing if you have multiple allergies- see what I mean?). IE, I would only switch one thing at a time so you can identify the allergy.

    I am no expert at this at all, but it sounds like others have given you awesome advice....seeing a kineseologist sounds like a great bet (sounds like this type of doc is more thorough and skilled than an allergist- I would research it and find out!), AND eliminating one thing at a time so you can isolate the foods/chemicals with which you have the allergies. It won't be an easy task, but it will help you in the long run. Keep a food diary and perhaps a "chemical/med diary". Once you get in the habit of doing the food diary, you will likely get used to it, and when you start seeing results, you will feel encouraged and want to keep it going.

    I haven't heard of NASH, but it's certainly something to investigate! Also, another thing to consider is Celiac's disease. In case you are unaware of it, it's a condition in which a person is allergic to gluten, which is a protein found in grains (and many, but not all breads). IE, try to find out ALL of the things with which you may be allergic to (hopefully you will find that there are several things that you aren't allergic to also!).

    Please keep us posted. I wish you the best of luck in making progress and hope it all goes well.

    P.S. It can only get better from here!!

    Warm hugs, Erika
  19. SherylD

    SherylD Guest

    Thanks so much for all your suggestions! Anyones ideas are great...Sometimes I just can't think at all, so it's nice when someone else does it for you!..LOL

    I read your bio....I absolutly love your attitude...I wish I could be more like you...I use to be before all of this...

    I see we are about the same age...I hate being in my thirties...

    The reason I switched everything was cuz I think the ingred. causing the problem is in all of the stuff I was using...I think I will just give it a while and see what happens..

    I have decided though to go to a different doctor...I can't stand not being able to eat anything..and it drives me crazy trying to figure out why I am having all these weird things going on..

    I had my swelling down and then last night I must have had something I shouldn't have..I am thinking it was these almonds I had...and then today it was really hot out, so I am so swollen all over and my stomach is huge.

    I do need to do a little more research...but having the time is not easy...I usually end up staying up to late reading, which does me no good.

    I use to keep a food diary...but I felt it didn't do me much good...at that point I felt like I was reacting to everything...Now I can tell a little more what's going on, so I think I will start that again.

    I get really sick and tired of keeping track of what I eat...and eating the same things all the time...I think it makes it worse on me...I get pretty depressed about it. I like to eat...I miss going out to lunch with my sister and friends...

    The last time my sister, and my mom and I went shopping they wanted to go out for lunch...I dropped them off and went to another store while they had lunch...It made me really sad..

    I feel people don't ask me to do stuff with them cuz I can't eat anything..very frustrating...:(

    Thanks for all your concerns...and listening to me ramble on..

  20. SherylD

    SherylD Guest