Body itching

Posted by Retired teacher @specialteacher, Jul 31, 2018

I’ve had almost unbearable itching for over 3 months. Was prescribed hydroxyzine, but it doesn’t seem to help. It started when I was in the ER having a very frightening allergic reaction. I was given an epinephrine iv, and a breathing treatment. My legs started to shake uncontrollably. Then I couldn’t breathe, was given an injection of something at that point. I’m taking benadryl and paxil but don’t know how much longer I can deal with this.

@basslakeview

Thank you so much!! I have included the two photographs that make me think I have Morgellens. I may be wrong. I also think I may have other things going on, too, of which I only know about one (demodex mites which ALL of us have), but I may have other mites or something else, as well. I would give anything to find out!!

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basslakeview I hope you get some relief somehow. It must be horrible to be itching all of the time.

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@barbarn

@basslakeview – so sorry you have spent all these years … isolated and fighting this alone. Early on in my husband's journey we chased the Morgellon's possibility and it seems to me there was a medical school, or some institution that was making Morgellons a priority …. but it will take me awhile to try to find who/where it was.

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I just started a new group…I forget who I've told so if this is old news just ignore. Its called "Morgellens and Other Parasites" if you run into anyone interested.

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@basslakeview

I just started a new group…I forget who I've told so if this is old news just ignore. Its called "Morgellens and Other Parasites" if you run into anyone interested.

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Here is the link to the new discussion group the @basslakeview started in the Skin Health group:

– Morgellons and Other Parasites https://connect.mayoclinic.org/discussion/morgellons-and-other-parasites/

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I have been diagnosed by Mayo with Central Sensitization Syndrome. At the onset of an adrenal storm back in June 2017, I was itching ALL OVER and had terrible pain. First my Primary misdiagnosed me with scabies. Well that was not it, as I went through 5 tubes of permethrin cream and countless cortizone creams with no help. He then prescribed me a cream in a little tube (as a dab will do you). I believe I found the cream for reference, as I only have short bouts of itching now, mostly on my head. The cream is Clotrimazole and Betamethasone Dipropropionate. From the name, it is most likely a steroid ctream. Amazing. The only other thing that killed the pain and itching when it was horrendous was actually drinking about 5 shots of Fireball. No kidding. I am not a big drinker, but I was willing to try anything. In about 30 minutes after having the shots, I was fine. I would continue 1 shot an hour to maintain the calmness. Hope this helps. I am not advocating drinking as a solution, but rather sharing my experience with all over body itching.

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Hi again everyone…I wanted to report back to let those of you who so kindly responded to my earlier skin rash posts. I was able to see my oncologist , who was able to see some fading rashes. She sent me right into dermatology, which took 3 skin biopsies. So far the results I can read say, ancantholytic dyskeratosis, and lymphocytic inflammation…which MAY be seen with Grovers Disease. Another biopsy also shows basil cell carcinoma…I'm sure unrelated.
I looked up the names and im not really seeing any cause or if its serious. I await a call from mayo clinic. Thank you everyone for your support !

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@dazlin

Hi again everyone…I wanted to report back to let those of you who so kindly responded to my earlier skin rash posts. I was able to see my oncologist , who was able to see some fading rashes. She sent me right into dermatology, which took 3 skin biopsies. So far the results I can read say, ancantholytic dyskeratosis, and lymphocytic inflammation…which MAY be seen with Grovers Disease. Another biopsy also shows basil cell carcinoma…I'm sure unrelated.
I looked up the names and im not really seeing any cause or if its serious. I await a call from mayo clinic. Thank you everyone for your support !

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Trust me if you do have Grover's you will be miserable, it is serious and chronic, it's not just itchy, you will be unable to put any pressure on torso afflicted area- can't even lean back in a chair or carseat. When broken out I hunch over to drive. Fortunately for me my sides have always been clear and I learned to sleep on one side and to never move. Grover's is just one of my types of eczema, sadly not much immediate help with breakout of torso- front and back. Even steroids don't help me. I have found 2 treatments that seem to lessen severity however that could be coincidental as many find future breakouts are not as sever. However many tips on how to stall a breakout as heat, sweat and friction trigger breakouts. All my outdoor hobbies- off roading in a bouncing Jeep, rock collecting, gardening any time of the year on so on have been curtailed. I now must be back inside with air conditioning by 10 am to stall next break out. So early gardening is a must. My first outbreak lasted 1 year which is typical, now 3 years later my breakouts have only lasted about 6 months and then I get a break for about 5 months. Praise be I have been in remission now for 1 1/2 months! That being said my biopsy was negative as it must taken at a specific stage of breakout and my pustules were not emerging, but had been there a while. Yet, no doubt I have this form as I meet 5 of 6 commonalities, the 6th is that the majority of sufferers are male.So pay attention to your symptoms even if biopsy negative. Still one can adjust as now I joined a bookclub, spend more time cooking and working on sewing projects. At least I can always sit or stand! Most of all I have learned to appreciate every pain free day!

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@gardeningjunkie …I kept telling drs at mayo that the rash was about 70-80 percent better when they took biopsies…i wish they could have seen it full blown. I did have photos though. I kept saying i hadn't felt well and had awful chills during the outbreak. The dr honestly said she didn't know why. Now, I pray they don't just cross it off as a Grover disease rash and not look for a cause . Isnt that just eczema?? I have a low MGUS, may or may not be related…but I've also had many odd health issues …an enlarged lymph node, which was removed , benign, (i was very sick and in pain) and some growths in my lungs, which do not look cancerous…that's just a few things I'll mention.
I think I'll bring it up again to dermatology..but it's all in my records. I would think they read it.

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Yes, Grovers is eczema. It will not kill you but at times you will wish you were dead. Itching and pain 24/7. I never had chills with any breakout. One of the commonalities in Grover's is lymphoma or leukemia or other autoimmune disease. I have/had leukemia, a chronic form CLL, which miraculously had a complete remission without ever having treatment. It's called a spontaneous remission, very rare. . My blood counts began their march to becoming normal about the same time I developed eczema, baffling to all. Rashes are so confusing and hard to pinpoint as there are so many causes and we want to give it a name so do doctors. Because of my studying and researching and seeing different dermatologist I now believe I do have the correct names for they types I have. I seem to keep adding one new form a year, up to 3 or 4 now depending on how one looks at it. The problem with eczema is that for many forms,but not all, there is basically nothing you can do to prevent it, breakouts will happen. Treatments can provide relief and speed in remission for some forms. I have also learned rashes on different parts of the body are often a different form of eczema with different triggers and treatments adding to the confusion. You have many ongoing health issues which may not even be related to your rash and worst of all, besides the rash, you don't seem to be feeling good.

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@gardeningjunkie …I appreciate your insight and your time you take to reply. I assume I'll be hearing from drs any day now…I'll keep in touch. Thanks so much!!

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@dazlin

@gardeningjunkie …I appreciate your insight and your time you take to reply. I assume I'll be hearing from drs any day now…I'll keep in touch. Thanks so much!!

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Mast cell disease is what my dr came up with after years of research. The persistent miserable whole body itch is triggered by who knows, often with face swelling double with the horrid itch. Steroids would calm it down but I’ve been given too much as it is so nothing now. Antihystemines four times daily, to 16 each day just to stay sane. Love working in yard however guarantee that my legs although covered doubly, will break into huge welts along with itch. Is this anything like yours? So very happy your lymphoma disappeared. May your cancer never return.

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@jennybay

Mast cell disease is what my dr came up with after years of research. The persistent miserable whole body itch is triggered by who knows, often with face swelling double with the horrid itch. Steroids would calm it down but I’ve been given too much as it is so nothing now. Antihystemines four times daily, to 16 each day just to stay sane. Love working in yard however guarantee that my legs although covered doubly, will break into huge welts along with itch. Is this anything like yours? So very happy your lymphoma disappeared. May your cancer never return.

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Jennybay- What literally saved my life was the 5 Day Extended Patch Test, for Allergic Contact Dermatitis, ACD. My internal skin tingling, itching, taser like stinging was with me 24/7, but it felt worse at night because; 1. Histamines are higher at night. 2. Nothing to distract myself from the itch. I had neurological testing first, it felt like my nerves were the cause, but nothing showed up. The pain and itch inside the skin is something doctors can't see and therefore our credibility comes into question and yes I was close to losing my mind. Still my appearance was fine with no visible rashes (although on and off for 10 years previously did have hand rash eczema). Test results showed I reacted and was allergic to 5 out of 78 patch sites on the True Test ACD test and 3 were at the highest level. Turns out my 6 month old memory foam mattress, 90% of my clothing,all my shoes, flooring, 99% of cleaning and grooming products, one class of corticosteroid and an endless list more that contained my allergies were either in contact with me or off gassing (yes chemicals and elements can transfer through porous coverings and though your skin and into your bloodstream). I did not have the facial swelling you get, but steroid use either via shots or long term use with topicals can cause swelling and redness. In one form of eczema, Perioral which is a rash around the mouth, steroids which help for a brief period, then feed the eczema. My advice to you is, if not tested already, get in to see an allergist or dermatologist who is licensed to perform the 5 patch day patch test, my medicare paid for it and it is expensive without insurance. Check with office when making appt. to see if this doc is licensed for this test, not all are. Google this test, lots of information online. Also I take 3, 24 hr antihistamines a day, which seem to help with hay fever as I also have environmental allergies. Can't say they do anything with eczema itching issues as you have pointed out.
Your leg breakout after gardening does make me suspicious that it is a contact or allergic contact issue. For me I must only wear 100% cotton or 100% polyester clothing as blended materials contain an element from rubber MBT which I react severly to 1. So what is the fiber of your pants? What is your laundry powder, although you wash all your clothing probably with the same detergent, I am allergic to preservatives and fragrance so I must use special soaps. Even if I have fabrics safe for me, I cannot wash with other family members laundry if they have unsafe materials as the chemicals and allergic elements will transfer into my clothing. They do not wash out, it is called cross contamination. Not all forms of eczema can be prevented with contact control, however with ACD you can prevent future breakouts by controlling your contacts. I knew I was getting my face in trouble a few days ago as I was cutting back some perennials and dividing them and since one is on hands and knees the old flower heads brushed against my face, I did wash face off about 30 minutes later, but now have some itching and slight redness below one eye on lower lid. My fault, I did not control my contacts. Environmental allergies that cause asthma or hay fever have a different test, it's a simple 30 minute office visit prick test which tests for dogs, cats, pollen, dust mites, mold and so on. These issues are unrelated to my ACD allergies.
Your leg symptoms after garden are baffling, I do cover up with long sleeves and long pants and a broad brim hat. Of course I wear 100% cotton, what are the materials of your gardening clothes? I am sure it is the same laundry detergent as you use on other clothing that you don't react to. Are you pants loose, tight clothing will cause me to itch or get red? Is it possible pollen is transferring through your pants? I have immediate contact allergies to cedar and my yard is full of cedar trees. If I just brush against cedar or juniper I will get a rash, yet my denim has blocked that. I must wear a broad brim hat because if even one tiny bit of cedar drops off a tree and down my shirt I know within a few minutes as I can feel the itch.
I have had to learn a lot about eczema to get to where I am today, 95% great at this moment, sure symptoms will return, but I am prepared for it. I so hope you can get a name for what is tormenting you. Even being told you have a chronic disease with a name, at least can give you something visible to attack! Without a name it's an invisible tormentor and you can't direct your battle! Even if you don't test positive to anything on patch test, at least you can eliminate ACD issues and search elsewhere. Also if previously tested, remember our bodies change. 15 years ago I did not have ACD, if tested I would have not reacted. So if tested in the past, get retested.

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@dazlin

Yes…how do I do that? I dont think photos are allowed here.

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@gardeningjunkie. Mayo called to let me know the rash is Grovers Disease. Nothing can be done but treat symptoms with wet wraps and steroid cream. They precribed Doxepin and Hydroxyzine only during flare ups, and stay on antihistamines 2x daily. The other biopsy shows basil cell carcinoma…she said they removed all of it with biopsy …should be ok… I remarked that it looks black and red around the outer borders.
and its tender ..she (dr) said have a local physician look at it..but she doesn't think its infected..all discussed on the phone.
I also reminded her that the biopsies of the rashes had diminished quite a bit by the time she saw me. She said another biopsy of a fresh rash would be helpful, however they cant guarantee an opening for me…so this is my ongoing issue for 5 yrs…by the time they schedule me, it's too late for an accurate diagnosis. All said, even with a fading rash, they picked up Grovers. Nothing said about why I felt I'll and had chills. No mention of any connection with my mgus.

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