Author Topic: Awful itching all over  (Read 2442 times)

Honeybee

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Re: Awful itching all over
« Reply #30 on: July 15, 2019, 06:36:43 AM »
Irish and Katie
Thanks again for your replies.
My liver is okay as the LFT were fine on the bloodwork, but a good idea anyway.
So, a few months into this now. Its not only itching on the body, the skin feels as if I have scratchy wool held to it, even my softest lovely cotton t shirts with the seams now on the outside are murder. I have brought lots of cotton t shirts, cut them up made them bigger and overlocked them into new designs, I have 3 overlockers as this constitutes my employment as a textile artist. My lovely pretty clothes sit abandoned in my wardrobe and I am frump lady central! Yesterday it was so bad I drove back home, ripped off my clothing and sat naked apart from some knickers with the elastic cut out. Lovely.
Another lady on her did post a similiar thing. I looked up small fibre neuropathy and discounted that as my sensation does not match that, no burning, tingling or pain, although it is as annoying as pain. But I do not think it is that.
I am in the UK so have tried many different creams, and tried not using moisturiser as well. I think there is a moisturiser trap, in that you use this stuff on your skin as you are advised and the skin craves more so by the time you are finished, the skin is getting even drier. I am limiting it to once a day now as I am breaking out in pimpels. And it is not making much difference to the sensation.
I am on a small dose of mirtazapine, Remeron in the states I think. I have rung several pharmacists and they all say no it will not cause this, BUT, I also know it has an antihistamine action and I cannot tolerate anti histamines as they dry me out. I have been on this for 20 years at a very low dose but it is hellish to come off of, not because you get your symptoms back but within a day, you are unable to sleep and you do lose your apetite. I was originallybput on it when I was in a very bad relationship with an ex partner, and basically it has always helped me sleep. Trouble is I am going through this and not sure if it is even causing the problem and withdrawing from it is by all accounts far worse then the literature has you believe. They actually give it for intractable itching, but there is a paradoxical thing with some medication and it may be that the action over 20 years is now causing some kind of reaction. Or of course itis another gift from Sjogrens.
I cannot get back to see my gp for 5 weeks as that is how the nhs is at the mo so have to cope really. And to be honest I am not sure she will be able to do anything about this, apart from refer me to somebody in the long run.
I am normally quite cheerful but feel really miserable today.
Thanks for your help folks
Honeybee xx

Carolina

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Re: Awful itching all over
« Reply #31 on: July 15, 2019, 06:54:03 AM »
Dear Honeybee,

I'm so sorry you are suffering this way.  I have many reason for terrible itching in my life (eczema, reaction to drugs, neuropathy).

The strongest all over itching was caused by medications containing codeine or codeine analogs.  I doubt if that is your problem since I don't think codeine type medications are used much in the UK.

Oral estrogen supplementation also caused all over itching, come to think of it.

I suppose you have tried the antihistamines like Benedryl (don't remember generic name right off),

Wishing you the very best and relief from all itching.

Regards, Elaine
« Last Edit: July 19, 2019, 09:13:43 AM by Carolina »
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jazzlover

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Re: Awful itching all over
« Reply #32 on: July 15, 2019, 07:06:59 AM »
Also consider looking at a low histamine diet.  That helps me.

I am sensitive to salicylates, so I have to avoid any foods that are high in sals, along with any body care products that contain salicylates.

One big thing for me is that I don't eat leftovers. Protein is the worst about having high histamine from being cooked too long or just sitting in the refrigerator.

If I cook something and want to eat the leftover, I will freeze it immediately, then thaw it later.

If I buy several chicken breasts, I will freeze the ones I won't be using that day.

Hope this helps!
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

irish

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Re: Awful itching all over
« Reply #33 on: July 15, 2019, 09:07:01 PM »
The way you describe it today reminds me of some of the issues I have with my hands. I have lots of neuropathy inn both hands ...either from so much carpal tunnel and ulnarcompression or from the spinal cord compression I had prior to my spinal fusion.

I feel like the ridges on all my fingers are about 1/2inch deep and my fingers hurt like crazy and burn at times. Hard to use the keyboard and to even do other chores. It literally pulls up into the nerves in my upper arms. Had more MRI this past week.

Your problem sounds a little like this only different. :D

Has the doctor tried using Gabapentin on you. This is an old drug that is given to many, many people for neuropathy issues. There is another drug in the same family only newer and more spendy called Lyrica.Diabetes use this a lot for the neuropathy of their feet. Just a thought. This may not be a true itch at all but a sensation related to nerve dysfunction.

I know that my hands get to me and the only thing that calms them down is to put on some disposable vinyl gloves. The slight pressure on my hands knocks then pain back a couple notches so that I can stand it. Also, my hands don't sweat at all and with the gloves on I will build up a sweat by morning which feels good. Ain't it fun. Seriously, I do hope that you can find something to help. Maybe some cannabis oil will help./ I am serious. Sometimes I think of asking about it cause  have so much back pain and hand pain. Thankfully is sort of lets up at times so life gets better. Take care. Irish

Honeybee

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Re: Awful itching all over
« Reply #34 on: July 18, 2019, 06:06:53 AM »
I am thinking that this is some kind of dry skin issue. It's not flakey but its lost its sheen. I have read more posts and some sound a little familiar with the sensation.
My face has always been dry and I have always used cream. But my body has never felt like this. None of the creams make much difference but I will not stop moisterising.
I really hope this is a flare, flares of my eyes last up to 8 months and never go back to normal.
It's difficult finding a moment to get comfortable as clothing loose and cotton still makes little difference.
To be honest judging from some of the dry skin referred to dermatologists , they are that interested. I am probably alone with this.
I have an Etsy shop and at the moment am finding it difficult to concentrate on stocking it and neither can I model the clothes I make as they are wool. I did stop making them for a couple of months to see if it was the wool, but it made no difference. I cut up old wool jumpers and upcycle them into pixie hooded coats you see, very careful with hovering after every cutting session.
I think this is a deep skin sjogrens thing.
I am taking fish oil  as of a month and now borage oil as of a week. I did start the pilocarpine again as somebody reported on here that it had also helped her skin, but I had not noticed any difference.
Sjogrens, age and poss subclinical thyroid could be all to blame.
Oh, and I do have low iron stores for which I am taking iron and vit c camu camu berries for the last 12 days. Itching dryness is mentioned with low iron too.
I feel like this is worse than my eyes and mouth and bladder all in one. I just need to see some light at the end of the tunnel and then I may have hope.
Xc

Carolina

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Re: Awful itching all over
« Reply #35 on: July 19, 2019, 09:16:29 AM »
Honeybee,

WOOL is my nemesis.  If I were wearing or working with wool I would itch uncontrollably.

Even once doing cross stitching with wool yarn was impossible.

Hoovering won't help because the wool fibers can be in the air.

I can't even eat lamb or anything made with sheep's milk.  I just throw up.

Regards,  Elaine
Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3

irish

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Re: Awful itching all over
« Reply #36 on: July 19, 2019, 11:19:11 AM »
I can't wear wool either. It makes me itch and even the thought of it makes me itch. We raised sheep some years ago and I can tell you that even the she eps wool is irritating  when they wear it. You have to wear long pants, long sleeves and gloves if you are sensitive. The wool contains a type of lanolin that I also think has some connection to the itching. It makes ones skin just raw to brush near the sheep.

Once they are sheared for the summer it is not nearly as bad until it starts to grow out again. Good luck. Irish

bdnews2

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Re: Awful itching all over
« Reply #37 on: September 29, 2019, 12:55:07 PM »
Hello everyone,   I have not been on for a really really long time.  Had some serious issues the last few years.  Anyway, I caught myself thinking about my chronic itching today as I got out of the shower and what I could do that I haven't already done and realized I have been so focused on my fibro and my back and arthritis, I forgot about the sjogrens, which shows up very prominently in my blood work.  I dont know how I could have done that.  Anyway, my husband suggested a dermatologist but I was considering going to my pcp and finding out if i have psoriatic arthritis.  The itching was usually confined to my forearms, now it is also my upper arms, across my shoulders and sometimes down my back.  I use aveeno body wash, eucerin calming cream and a concoctation of my own (generic benadryl cr, hydrocortisone cr 1%, 5 drops vit e oil and 5 drops cbd oil).  I am a pharmacy tech of 40yrs that's how i came up with this.  Anyway, there are days where just the eucerin works and some days I use it all, sometimes within a 2 hour period before it stops.  I pay attention to my diet, no salt, acidic vegetables or juices, plenty of water, limit my coffee.  My skin is sooooo dry.  What I like to use is the bath & body works lotion but the fragrance makes me itch more and they don't have one thats fragrance free.  I take a loratadine at night.  I cant take the gabapentin or the lyrica so pain is controlled by arthritis strength tylenol.  I have robaxin and tramadol for my really bad days.  I know i have been going on and on but I wanted to know if anyone has considered or saw a dermatologist and the results. Like some of the previous posts, I feel like i wear a burlap sack sometime so I stay in my soft 100% cotton jammies most of the time.  Thank for listening.  Suggestions are welcome, no matter how bizzare.  :)   Marie
Marie

irish

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Re: Awful itching all over
« Reply #38 on: September 29, 2019, 11:48:01 PM »
Welcome back. Sorry to hear that you are having enough other issues to almost forget about the Sjogrens. That really is a double whammy isn't it.

With all the stuff you mention for your bath/skin, etc I thought of the products that are oil free and used to cleanse the skin. My middle son had really bad dry skin when a toddler and I would use this product instead of bathing. I would wash is gotten with water and fortunately he didn't have problems there with itching. His arms and legs would get so bad though. Equate (Walmart) makes a cleansing lotion that I would apply and then wipe it off with a clean dry wash cloth. It really cleaned the skin well(even the dirty elbows) and then there is a lotion that can be applied to soften the skin.

I just remembered the Brand name and it was called Cetaphil and was spend in the Brand but Walmart was much cheaper. I always read labels when I am using something to replace a brand name. Maybe that would help some. Just omitting water helps some people. Good luck. Irish

Beverley

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Re: Awful itching all over
« Reply #39 on: September 30, 2019, 07:19:40 AM »
Dear Honeybee,
I had severe itching on my legs particularly and my rheumy thought it was sjogrens related.  I have been prescribed Oilatum and then Doublebase gel, both of which can be used in the shower, or as a moisturiser.  I use it as moisturiser and it seems to keep it all under control.  I have no rash and my skin doesn't look particularly dry, but if not treated the itching can reduce me to tears.  I have started recently to experience the itching on my thumb joints and backs of hands and on my ankles.  This makes me wonder if it is linked to my osteoarthritis, or inflammation generally.  Anyway these two products I had prescribed through NHS.  Oh and my Mum has an overactive thyroid and her specialist told me to let my rheumy know because it was very likely that with sjogrens I would develop it as it is in the family.  So who knows?

Best wishes.

bdnews2

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Re: Awful itching all over
« Reply #40 on: October 01, 2019, 08:27:04 AM »
Honeybee,  I was diagnosed with hypothyroidism, sjogrens, arthritis and fibro all at one time.  I had a hard time telling what symptom came from what.  The thyroid thing does not run in the family.  I am the only one so far.  Funny but, come to find out my bigger dog, Dale, is hypothyroid too.  I give him a canine Synthroid every night after he eats. Put him on Purina ONE weight management and he seems to have lost some weight but he definitely has some of his spunk back.  Anyway, the Synthroid helped with some of the drowsiness,  I was literally falling asleep at my desk.  My daughter sat at a corner unit off to my right and she was always poking me to wake up before someone came thru the door and caught me.  I get it now but only if I don't sleep well.  I have most of it under control except for the insistent itching.  I know it sounds gross, and it is to me, but I avoid taking a shower as long as I dare due to the severe itching after.  even washing dishes makes my hands itch.  I know with winter coming, I will get drier yet.  I will look for the generic cetaphil.  I see the ads on tv for it so maybe its time for a change.  Thanks for telling me.
Marie
Marie

jazzlover

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Re: Awful itching all over
« Reply #41 on: October 01, 2019, 08:35:05 PM »
To anyone who is itching .. Don't forget to consider your diet. A low histamine diet helps me. I also cannot eat anything with moderate to high salicylate content. NO LEFTOVERS either .. sure helps me.
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

bdnews2

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Re: Awful itching all over
« Reply #42 on: October 02, 2019, 11:27:59 AM »
Come to think of it, I have found that leftovers taste saltier then the original meal.  I don't use salt at all even for cooking.  And things that I fix for hubby that I know are too salty for me I don't eat.  He has gotten used to my "weird eating habits"  but he is only teasing me.  The rest of the family look at me funny.  But I do stay away from chips, pretzels, dips, tomatoes, ketchup, mustard, steak sauce.  Mostly anything already prepared or processed.  Sometimes I treat myself to a few chips but have water or something else to drink with it.  Just for the taste of it. I don't eat can soup or most frozen meals.  Creates more work for me having to prepare fresh every night but  when I cheat and fix something already prepared for frozen, I pay the price.  Eating out is the same. I have to watch what I order.  Such a pain.
Marie

Honeybee

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Re: Awful itching all over
« Reply #43 on: October 04, 2019, 05:07:37 PM »
Hello chaps
Well I am now into my Seventh month of skin issues.
Am reduced to wearing silk satin and that's it, no more normal clothing for me, well at the mo anyhow.
Itching but the worse aspect is the Hessian sack feel of my skin, horrid. Just hoping it will eventually ease enough to give me a little more hope. Still moisturise and have tried both natural and not so natural moisturisers.
I have tried a low histamine diet but to be honest having read lots about mast cell disease , I doubt I have it as I do not exhibit other signs of this complex problem, in addition anti histamines offer no relief which obviously if it was MCD they would.
Am trying gluten free but strongly suspect sjogrens.
I have yet to see a derm as the NHS has a long six month wait but I really do not think this thier area, no rash, mild redness but nothing to shout about.
Still taking iron as this started after blood donation for autologous eye serum. Have no idea if I am still low on iron in iron stores as in May.
Will see my rheum in Dec.
Somebody on here, cannot remember who said that their salagen or evoxac (in the us) said it also helped her skin, would love to make contact with her.
The net does not have much to say about this particular skin sensation and sjogrens but there are some limited papers relating to itching and sjogrens, just wish I could highlight it more as this is worse for me anyway, than my eyes, bladder and everything else put together.
Totally get putting a bath off, bathe once a week.
Just lost my front tooth too, so pursuing both private and NHS dental, hardly any teeth left in top jaw, so with the baggy clothing, no bathing and now no teeth , what a desirable gal I have become........
Sorry to everybody who is suffering
Xx honeybee


happylife

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Re: Awful itching all over
« Reply #44 on: October 06, 2019, 06:53:30 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

Please get the below tests done. AMA and igg4. This can possibly explain itching.