Author Topic: Awful itching all over  (Read 1678 times)

Honeybee

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Awful itching all over
« on: June 11, 2019, 02:45:37 PM »
Hello
Does anybody have any experience of chronic itching all over?
I was diagnosed with sjogrens about 2 years ago having siffered from dry eyes for 15 years. Over the past few weeks I have developed a terrible itch that will not go, there all day and worse at night. My lovely soft cotton clothes have to be worn inside out to avoid seams rubbing and I have changed my cotton bedclothes for soft brushed cotton.
I only ever bath once a week as my skin is dry anyhow, never use bath products and use pure unscented soap as I have done for the past 10 years.
I use E 45 simple moisteriser as I have done for the past 20 years so not a lot has changed. Not changed washing powder.
I finally went to my gp who sent me for a chest x ray to check for poss lymphoma and blood tests. Have not heard from the urgent x ray so hopefully things are okay, bloods are fine but have revealved a loe TSH, preseumably nothing wrong with thr t3 or t4, so this may poss be a 'subclinical" thyroid problem. Low tsh indicates over production but I have not been losing weight etc, perhaps it can go high before it goes low? I do not know, but what I do know is at 54 and having gone throught the menopause 2 years ago, itching can be a problem.
I am so uoset, sitting here crying my eyes out as I cannot sleep with the discomfort. So, my question is this a sjogrens symptom and secondly what the heck can i do about it. I do not smoke, drink alcohol and have started using my cream twice a day.
My guess is that the menopause may play a part but I need to be able to address this and soon as I am getting very down now.
I would be so greatful for any help
Honeybee x

Sharon

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Re: Awful itching all over
« Reply #1 on: June 11, 2019, 03:25:24 PM »
Dear Honeybee,
Since developing SS I have had a suuden onset of all forms of strange allergic reactions.
Itching has been one of them. MCS (multiple chemical sensitivity) seems to be responsible for most of my itching.
I must use soapless soaps, fragrance-free everything and no detergents in laundry, no cleaning products with chemicals...I suddenly can't toerate rubber either.
You can try changing these things and see if it gives you relief.
You can also take moisturizing baths with oils used for dermatitis (almond oil is also good).
Mosquito bites in the summer can also set off full-body itching attacks if you're sensitive.
If all else fails, you can try taking Ketotifen which is a mast cell stabilizer (antihistamines are very drying).
Hope this may be helpful to you, I know the itching is maddening!

Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
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Scottietottie

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Re: Awful itching all over
« Reply #2 on: June 11, 2019, 04:52:13 PM »
Hi  :)

Check all medications and make sure that itching is not a side effect of any of them. I'm not saying they are - but it's always worth checking.

Take care - Scottie  :)
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Headen

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Re: Awful itching all over
« Reply #3 on: June 12, 2019, 03:04:57 AM »
Is developing allergic reactions like that a common side-effect?

araminta

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Re: Awful itching all over
« Reply #4 on: June 12, 2019, 03:57:17 AM »
So sorry you are having this problem, itching is horrible, especially if it's keeping you awake at night.   I think we can put up with a lot of things if at least we can get to sleep at night.

Menopause is certainly a possible cause of this, and that type of itching should wear off in time.   

Stress can worsen itching, and it does sound as if you are getting very stressed, so anything you can do to lessen that and distract yourself would be a good thing.

I wonder if a cool bath with moisturisers in it would be a help before you go to bed?

I've been using Instituto Espanol urea treatment cream for skin dryness for some time, it seems very good.
Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.

Honeybee

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Re: Awful itching all over
« Reply #5 on: June 12, 2019, 05:21:55 AM »
Thank you very dear friends.
I never use any soaps, even for washing clothes, just on a boil wash.
Scottie. Checked meds and nothing popping up there. Am still wondering about this TSH(t4 and t3. Normal) low reading. Thyroid could be coming my way? A few weeks on and there is slight red patches and not just the scratch marks.
I tried an antihistamine last week and apart from stomach upset, it dried my eyes too much.
O jumped out of bed at 3 in the morning, striped off and walked around my house for an hour just to change the sensation. I thought my eyes were bad!....
Love Honeybee
I am interested in the oil baths and the other cream mentioned.

lorigacc

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Re: Awful itching all over
« Reply #6 on: June 12, 2019, 06:17:12 AM »
Hi Honeybee....so sorry to hear you have this problem. I understand...because I HAVE IT TOO...and at times felt like I was gonna lose my mind (with not only dealing with the constant itching, but dealing with doctors who made no effort to figure it out).  I have both Sjogrens and RA.  Started itching a few years back, and for the longest time, thought it was due to sun damage. I was a sun worshipper in my younger days and thought the itching was due to damaged skin.  At that point it was mostly my back that was itchy.  It was never ending agony. Kept a letter opener near me at work...several bathroom trips to scratch against the wall...and then sleepless nights with more of the same.  At some point itching started everywhere else, showers made it worse, water made it worse, and any clothing against my skin made it worse. Finally went to a dermatologist...and they of course were not going to examine an autoimmune component..and so labeled it eczema and gave my steroid cream.  The cream helped very little. I think that I may be in a slight remission, because it is not as severe as it has been. I still hate taking showers cause the itching starts soon after.  Also, finding clothes is also a challenge. I feel like everyone thinks I'm a lunatic...but I know that this is real. I have also had thyroid issues, so maybe there is a connection. To hear that I am not alone, means a lot.  Please keep me posted on how things work out.  Hang in there :)
Secondary Sjogrens, Rheumatoid Arthritis, Antiphospholipid Syndrome, Osteoporosis, Vertebral Compression Fractures, Seizure disorder, Neuropathy
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jazzlover

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Re: Awful itching all over
« Reply #7 on: June 12, 2019, 09:17:02 AM »
Have you been checked for Hashimoto's?

I have MCAS and MCS .. plenty of itching if I don't monitor what I eat. I have to eat low histamine and low salicylates ...as well as low oxalates, so there's nothing left to eat.

I got rid of my rash, ezcema and most itching by going low histamine and sals and taking antihistamines. I also take cromolyn sodium for mast cell stabilizing.
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

Honeybee

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Re: Awful itching all over
« Reply #8 on: June 12, 2019, 02:17:28 PM »
Thank you once more for your advice.
Lorigacc. Sorry you have had this heck, intetrresting you have anticardiolipin antibodies, so do I. I read somewhere that some aps folk itch! And one of them said that when they take the blood thinners the itch can stop. I am not on any anti coag as when I passed child bearing the, they stopped it. (No children). You describe just what I am going through right now. I have not really got a rash, just a bit of faint redness. I do not think I will waste time with a dermatologist as I do not think they will help. Might ask to see an endocrinologist although I imagine they may not refer me as it's only the TSH that is out at the mo.
I also have interstitial cystitis so am interested in mast cells as that is closely tied up with ic.
I hope I can get comfy enough to sleep as although I am an artist who works from home, I completely am unable yo concentrate.
You have all been very kind and as I am low I really do appreciate it.
Xx

jazzlover

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Re: Awful itching all over
« Reply #9 on: June 12, 2019, 03:10:43 PM »
Honeybee... big connection between IC and Mast Cell Activation.

I would see an allergist/immunologist.
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

bluegardenia

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Re: Awful itching all over
« Reply #10 on: June 12, 2019, 03:25:44 PM »
itching cannot be related to peripheral neuropathy? I started the same myself since a few days. its not real itching its a sensation of itching but it moves around and scratching is useless. some drops  of valium help. I also noticed that if a mosquito bites me I feel the itching much more than a "normal " person and it lasts a lot like if I had the memory of the bite
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irish

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Re: Awful itching all over
« Reply #11 on: June 12, 2019, 06:14:08 PM »
Sorry to hear that you are having so many issues with the itching. CAn drive a person crazy...my hubby had this a lot when he was alive. It was related to his celiac sprue and also an allergy to his one asthma inhaler.

If you can find a dermatologist who has good praises from the community you might be surprised. Many of these docs know a lot about autoimmune diseases as most of the AID have a lot of skin issues. Also, the immunologist/allergests are really good to see as they  know a lot about many aspects of AID and allergies.

These 2 types of doctors are in short supply over the country but if you have someone who could give you a referral to the doctors in your state university system it could really help. Good luck to you and keep us updated please. Irish

Honeybee

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Re: Awful itching all over
« Reply #12 on: June 13, 2019, 05:41:34 AM »
Thank you again.
I  in the UK so will look around for a consultant who may help. I see Dr Price in Swindon who is sjogrens specialist but am not due to see her until next year as they have just cancelled my app.....
Honeybee x

Honeybee

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Re: Awful itching all over
« Reply #13 on: June 13, 2019, 05:47:26 AM »
Just to reitterate how grateful I am for all the advice.
I have made a list of some of your points, there seems so many possibilities so I may have to think of the most obvious given my diagnoses. I wonder if my GP will take the possibility of mcas on board, I will push that one.
Honeybee x

Skylar

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Re: Awful itching all over
« Reply #14 on: June 15, 2019, 03:35:18 PM »
Could it be something you are eating? We can develop allergies at any age. You might want to try an elimination diet. They are hard to do, but if you eat a limited diet of least allergic foods for a week or two and see no change then you can rule out food. Dr John McDougall has lots of information and a really good elimination diet on his website.