r/Fibromyalgia • u/bynarymind • 1d ago
Question Unbearable itching?
Anyone else suffering with this? I have not been able to sleep much as I just cannot stop itching everywhere. It's never normally this bad, I've changed nothing. My nose and face itches, my torso itches, my head itches, my arms and legs itch, I just can't get away. I've taken allergy tablets in the vague hope it'll help, I've applied moisturizer, I've used cold compresses, but I'm just stuck in itchy hell
Anyone else suffering from this?? I feel like I'm going insane!
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u/Expensive-Lemon-2678 1d ago
Oh man the itching is the worst, my wife gets it bad with her fibro too. We found that a warm bath with some oatmeal stuff helps a bit, not perfect but at least she can sleep few hours after. Have you tried checking your laundry detergent? Sometimes the simplest thing is the culprit
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u/bynarymind 1d ago
I'm gonna be honest, I haven't done laundry in ages due to the fatigue! I haven't changed anything either, no new products, nothing. Thankfully it seems the Allevia is finally working 😭
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u/SurroundWorldly8902 1d ago
Hello! I apologise if this is not the time or space. But I was diagnosed with fibromyalgia and CFS/ME in 2011. This year, I went on a medical re-investigation and have been diagnosed with a whole host of illnesses that are commodities of fibromyalgia (or rather, vice versa). One of those is MCAS, mast cell activation syndrome. Over the years my itchiness (MCAS symptom) would come in different forms and triggered by different things. But treating MCAS and decreased my itchiness the most. I apologise for armchair doctoring, but I just would hate for anyone to not at least rule it out. Good luck!
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u/bynarymind 1d ago
It's all good! Because of the increase in a lot of symptoms (my sibling/carer has noticed a bunch as well) we actually arranged another assessment with rheumatology! Neither one of us is convinced it's "just" fibromyalgia, so I appreciate the supporting experience from yourself (:
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u/boostingjuice 1d ago
Dunno if this is helpful but I've gone through about 8 solid months of every test under the sun to diagnose what's going on with my body and my doctors have said it's more than likely fibro......
But I recently learned that gluten intolerance shares fibro symtpoms AND itchiness!!
Note: not coeliac, an intolerance.
Anyway I've cut out gluten the past 2 weeks and notice within a few hours of eating some I get the pain back!
Worth a try :)
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u/SJSsarah 1d ago
Same for me too. Not a celiac. But now that I cut gluten out of my diet, I can tell when I’ve accidentally eaten it because the skin over my kneecaps get itchy and scaly.
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u/AdFreeSlime 1d ago
Hard fucking same.
Sometimes it's my skin being dry, and colloidal oatmeal lotion helps-- or i am literally feeling the static electricity on my bodyhair and i just flick water over the itchy part without touching it. Disperses the current without being wet enough to need drying and thus more static.
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u/Feelsthelove 1d ago
I used to have such itchy legs. I could have scratched until my skin was raw. I found Savella helped a lot. Prior to having that, I was using Triamcinolone. Still use it but not as much.
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u/Efficient-Appeal7282 1d ago
YES, the itching is unbearable. I bought Sarna Sensitive anti-itch lotion to use and that has helped but what helped me the most was Lyrica (Pregabalin) It turns out what I have is neuropathic itch, basically my nerves are misfiring and making it itchy and if anything touches it, or i give up and scratch it makes it 1000x worse. I started lyrica 75mg twice a day and the itching is GONE. But the sarna lotion the anti-itch one did help in the meantime. Sometimes if I get a bad migraine i will get itching with it and i use the lotion. it has an analgesic in it to numb the area a little bit. its a white bottle with purple on it.
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u/wendz1980 1d ago
I started on Pregablin for restless legs a few weeks ago. That along with my itching has pretty much disappeared. I’m on the same dose as you. I’d scratch the itchy bit and as soon as I had relief another itch popped up. Restless legs were happening at any time of day. I don’t settle well at night as I had to come off nortriptyline a few months ago but I’m less fidgety.
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u/Efficient-Appeal7282 1d ago
My restless legs is all times of day too but nights was the worst. I’m on Ambien now too because I could not and can not fall asleep. My legs just won’t stop.
I bounce my legs all day long I don’t even notice it anymore I do it so much1
u/wendz1980 1d ago
I’d look into pregablin. I put off going to the doc for years. But when it was happening all the time I was disturbing my partner as well which wasn’t fair. He has a heavy manual job and gets up at 5.15sm. So I bit the bullet and phoned my GP. I’m not quite a month on them yet and I’ve had minimal itching, (time of the month it would usually be worst just now), and once had restless legs a few days after starting. Whether it’s a long term solution remains to be seen.
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u/Efficient-Appeal7282 1d ago
I’m on that twice a day
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u/wendz1980 1d ago
Will your GP let you increase the dose? Oh and I’ve just remember that my GP initially wanted to put me on quinine but I’m on other meds that don’t mix well, there was a second drug she looked up but I’m afraid I can’t remember what she called it. Not giving medical advice here but might be worth looking into.
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u/Efficient-Appeal7282 1d ago
I just saw her about 3 weeks ago and she gave me a three month supply of it 75mg twice a day. I’ve been on it about 6 weeks now. It did stop the itching instantly but not the restless legs
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u/wendz1980 1d ago
I hope for you that when the 6 weeks ends your symptoms have reduced or disappeared. If not I hope you find your solution.
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u/Efficient-Appeal7282 1d ago
Thanks. I’ve been on it for 6 weeks already and have 3 more months at the same dose so it’ll be like 4 months at this dose. Then I see her again
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u/Xtreemjedi 1d ago
I get it but likely for a different reason. I'm male and very hairy, and with the gift of fibro I can be bothered by a single hair being moved.
I feel like the terrible version of a superhero. Sometimes the fan or even just the AC blowing from a register on the ceiling is bothersome or painful. I can feel when an insect lands on me immediately, etc. Yes it's severely annoying and I've never gotten used to it.
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u/FlamingSpuddle 1d ago
I get this and it keeps me up at night.
I used to get awful hives and ended up being diagnosed with Chronic Spontaneous Urticaria, so I just assumed it was this.
I never linked the itchiness to Fibro but it makes sense. Our bodies are hypersensitive with pain so being hypersensitive to itchiness isn't a stretch.
I've found that cold compresses help a bit.
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u/Objective-Dream-904 1d ago
Yes. I'm scarred from it. Gluten-free diet helps me somehow. I hate being GF but less inflammation, less itching, no more GI bleeds, calmer moods... make it worth it.
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u/PhotographAny1760 1d ago
Do antihistamines help? It could be an allergy or intolerance. I was diagnosed with fibro and then Chronic Spontaneous Uticaria and currently being checked for MCAS. Don't just assume it's fibro when you get a new symptom, it could be something else!
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u/elderflowerfairy23 1d ago
Oh yes. I wouldn't say it's intense itchiness like from nettle sting or mosquito bite. But it's persistent and all over. Laying in bed attempting to ignore the neuropathy pains and then the itching. Face, nose, neck, chest, hips, knees. I honestly by times feel as though I am losing my marbles.
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u/iammayonnaise91 1d ago
It is unbearable. I've been prescribed a couple of things to try and none of them worked. Mines mostly lower legs and back, and some days I scratch until it bleeds and its still itching 😔
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u/WanderingGhost27 1d ago
I have eczema pretty badly on my hands and wrists, along with fibro and so many other issues! The itchiness is crazy, not just the eczema, but the random areas too! I use cold compresses and benadryl, but still it persists. You are absolutely not alone, and I wish you well! 💜
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u/Individual_Ant_1456 1d ago
Are you taking plaquenil? Because it made me mad with itching due to being allergic to it. Just a thought.
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u/drrj 1d ago
The last year has been the itchiest year of my life. I think that’s at least partially age/perimenopause related, but when the itch is “burning” as well I know it’s the fibro. Idk why skin issues decided to start up - about five years ago I started getting burning patches of skin over certain trigger points - but it’s not my favorite symptom to be sure. I actually now have a back scratcher right by my bed so I can go to town.
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u/Nyaiv 1d ago
Is itching a fibro thing too?! How many more symptoms must I suffer from...Lately I've had really itchy, lumps under my skin. I have a type of dermatitis so I thought maybe it was just that, but now I'm not so sure...
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u/bynarymind 1d ago
Unclear - I have had positive tests for Sjogrens and itching is a big symptom for that, even though I've not been diagnosed cus my eyes and mouth aren't dry enough
Auto immune conditions are so intertwined it's impossible to say for sure
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u/annon-hill 1d ago
It’s part of my cycle. Not something every day, and I haven’t noticed an outside cause. Usually, if I’m itchy then there’s probably an achy flare coming within like 3-5 business days.
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u/blackmetalwarlock 1d ago
I also get this. Especially on the inside of my feet. I cannot describe it. Sometimes also inside of my skin on my back.
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u/Winnie-booboo 1d ago
You may want to have your thyroid hormones checked. About 13 years ago, I went through a season of on-going itching…yes, it was fall/winter but this went beyond seasonal itching. Well, I eventually had my thyroid hormones checked, and they were very low to nonexistent. Synthroid cleared that up right away.
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u/DOOMCarrie 1d ago
It's a very uncommon symptom for me, but I hate it so much when I get it. Would love to know what helps too.
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u/sarahfuzz2020 23h ago
As a way to combat this is use moisturizing lotion everyday. Do it the first thing in the morning. It seems to help for me, hope it does for you:)
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u/orcabutt_ 22h ago
Sometimes I’m unsure if it’s the MCAS or the fibro, but when I itch, it’s bad. My scalp, my arms, and my stomach gets really bad too. Also the backs of my knees??
Gross moment. But usually with my legs, it just feels like I’ve got bugs under my skin…
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u/sheofsilence 10h ago
On top of the constant itching , I have very short arms. I can't reach most of my back. T.T
My wife helps by giving me scritches and I use a bamboo shower brush to get my back if she isn't around.
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u/bynarymind 7h ago
Hooray for hypermobility! My shoulders are flexible enough that I can get my entire back with no trouble at least!
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u/abyssaltourguide 6h ago
I got diagnosed with Chronic Urticaria! I take Rhapsido and some antihistamines every day and the itching stopped thankfully.
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u/ch1984 1d ago
I learned that there is something called neuropathic itch. I had an unbearable itch for years and I took Lyrica for pain and then my itch stopped. Couldn't believe it.