Extreme Itch in Fibromyalgia & Chronic Fatigue Syndrome

I start getting itchy and twitchy around 7:00 almost every night. It’s maddening. Nothing helps. I get it all over, including in my ears, nose and throat. If anyone has a treatment that works, I’d be forever grateful.

I have found ice to be helpful. Try a netti pot for your nose, and crushed ice for your throat. Your ears may itch because they are attached to your throat via the Eustasion Tubes. Holding ice at the back of your throat may give your ears relief.

I get itchy and sore everynight too, especially if I have done too much. I have to sit and rest and either soak in cool water or cold cloth and i take chlortabs (generic for chlortrimatine tabs). It always works for me

This surely makes great sense to anyone.

I used to get itchy. Found out I can’t use cheap shampoos and soaps, like Suave and White Rain. There was something in them I was allergic to. I use Pantene now and the itch is gone. It’s worth a try. I am also on Neurontin which helps the nerve pain.

I also can’t use many shampoos, it is the sulfates in them, lotions also…that contain lanalool.

Oh wow…I never thought about that! I’ve been using cheap shampoos for a while now and have been scratching my head like crazy!!! I should have thought about it as I am sensitive to a lot of things…thanks!!

I had been scratching my head like a crazy for YEARS.Some months ago I began to use shampoo without sulfates and now I feel better. I feel itch in my arms and neck too.

Lori, I have found Neurontin to be a Godsend! It helps so much with so many of the wide variety of Fibro symptoms. I keep repeating it but I really think people like us shouldn’t fear it, it’s not addictive and it doesn’t make you high or have any sort of severe side affects. In fact, I don’t notice any side affects, I split my dose throughout the day building toward night time so that I can relax and get to sleep at a reasonable hour. My dose is 3,000 mg a day. I know that sounds huge but you build up slowly and it works great. I have regular blood tests and my kidney and liver function are very good. I wish more Drs. would catch on to using this for pain, sleep and other similar symtoms like the itching we tend to get. Thanks for bringing it up.

I take 600 mg of neurontin per day, at bedtime. It does have side effects, though you may not notice if you’ve been taking it a while. It was prescribed for me by a pulmonologist. It is “off label” for my symptoms, but it works. It is an anti-seizure med, so some (most?) doctors wouldn’t know about using it for other things.

There are two shampoos without itchy stuff: WEN, available at Amazon and other places, and ONE, less expensive and also available on Amazon. I buy the latter at a local beauty supply store.

wow i couldn’t believe it when i saw this i have always has a problem with this but it would only happen once in awhile when i get tired or stressed but as the years went by that seemed to increase but i did’nt even think or know that it might have something to do with FIBRO i recently went to the doctor and told him i needed something for stress and that it was making me itch sooo bad i wanted to scream and pull my hair out he gave me Clonazepam it seems to calm me down some and help with the itch some but it makes me feel drunk and tired i have to go lay down and it puts me right to sleep witch is ok cuz i cant seem to sleep anyway im on the pain meds u said but dont find that they help i have all that u said burning, tingling, numbness, pin pricks and itches its like having restless leg syndrome all over your body but for me stress does make it worse going somewhere to be by yourself helps a little but i dont know if someone has any help i would love to know THANK U VERY MUCH~~

Histamine, a substance usually released during allergic reactions can cause itching. Benedryl, an antihistamine comes in a creme form for putting on itchy skin. If cremes do not work, or the itching is widespread, there are also over-the- counter oral antihistamines available, which may help relieve the itching. Tricyclic antidepressants such as Doxepin or amitriptyline also have antipruritic properties because they contain a very powerful antihismanic ingredient.

I have to take a Zyrtec every night when the itches start (it always starts in the early evening). If I don’t take it early enough, the itching would keep me up all night!

I started using childrens benedryl in liquid form – 2 tsp at night. It helps calm the itching. Anything brushing against my skin at night can cause more itching – sheets, clothing, my hair falling into my face, neck and shoulders – even the breeze from the fan.

My doctor gave me the smallest dose of Clonazepam and it doesn’t work then Atarax which sometimes helps but makes the RLS worse so I may try the childrens benedryl. When my hair gets in my face it itches and I want to shave my hair off. It’s getting close to that time because my nose and fingers are starting to itch or maybe a crawling feeling with it. Why won’t doctors just give us something that works? I have had about all I can take. I don’t drink but at night it sounds like a good idea. About 6:00pm mine starts but it’s a little early this afternoon, it’s 5:00pm so it’s going to be a long night. Thanks for being here.

Again I can relate! Hyper sensitivity esp as you described. Summer breezes may be nice but they’re also killers, too!! I am driven crazy by clothing tags hitting my neck. Love that many companies now using printed on tag info instead! I get many other skin sensitivities, too. Those silly Fibro nerve problems! I used benadryl so much when I worked grave yard shift that I developed a “paradoxical reaction” to it – meaning that I react the opposite of how someone is supposed to react. So, in stead of sleepiness, I get hyper and antsy and wanna run around the block!!

How strange. I’ve had an itchy scalp since around the time I lost one of my grand-parents and had continued to believe that it was caused by stress.
I’ve never connected it with my FM, you’ve given me food for thought and I’m gonna research some more.
Thanks.
Dee

I usually just take benedryl and suffer LOL

I find natural fibres through the day so you dont get too hot or cold help a lot, this can be a delayed reaction. I also have a co-disorder which is a rare autoimmune sensory neuropathy, so I have to be excessively careful or I dont just itch, I feel like a voodoo doll!! Acupuncture is great too, my therapist is now used to me turning up with biro shapes everywhere to help her see which nerves are worst. Finally voltarol gel is good, or biofreeze as they help numb the area.

It is so odd, the things i thought were unrelated to the fibro seem to be related after all… the rocking back and forth, the sensitivity to light and loud noises and now the itches! what next? benedryl helps me.

OMG… I completely agree. All these things that I have had for years nearly on a daily basis that I thought weren’t in anyway related to FMS in fact are absolutely related to it. There’s been so many times I thought I was going crazy. I don’t know about your Dr. but mine is very sympathetic and tries hard to relieve “all” of my symptoms but as they change daily, it’s nearly impossible to completely inform patients to the many, many, many, many symptoms of FMS. So most of it (symptoms and treatments) I am finding out as they come. It’s so wonderful to have an outlet and resource to help all of us.

I’ve long wondered if my itchy bumps were related to my fibromyalgia. I get tiny red bumps, usually on my legs, that itch with great burning intensity. One or more will break out, then disappear while others break out elsewhere. Then, for stretches of time, no itchy bumps. They seem to reoccur in the same places where they were before. Doctors always suggest that they are insect bites, but no, I’ve lived with this pattern of bumps for enough decades, and in enough different environments, to know that’s not the case.

Does this sound familiar to any of you?

I use a topical anti-itch cream, Gold Bond for now. It is effective for about 6-8 hours per application.

I get the bumps on my leg too, but they don’t itch as much as they are painful.

I get those bumps on my legs too – just one area. I can’t scratch or it really burns. I use an anti-itch spray – OTC. On my head I use that anti-itch liquid for hair – OTC

I get what I call hot spots, mostly on my palms. One will appear, say near the thumb, then as the day goes on it will move across my palm and itch like crazy while burning too. Sound crazy? My husband watched it happen so now I know it’s not all in my head! LOL really. i get itchy all over as well. As others stated cold, topical 1st is always best. I have also found Curel soothing lotion really is. I usually need 2 coats before it breaks the itch. I am a 20 yr FMS sufferer and have blamed it on everything I have. No to meds or surgery unless I can’t walk. That hasn’t happened in 10 yrs. although I have been told that was what I needed to keep me on my feet. No, it wasn’t. I choose where I spend my energy and protect it as much as I can. I am lucky to have a husband who believes and understands, chldren that are grown and no grandkids to pick up.
I hope you all find peace and less pain.

I have had the itchy patches like that too. I have eczema. It is always in the same places when I have outbreaks. A patch on my calf, a patch on my thigh, the side of my breast, my low back and worst of all places, my crotch. I have gone nuts with the crotch thing and no one ever figured it out. I have steroid creams that the dermo gave me, but you have to use them in moderation or it can screw up your skin even more. I have been dealing with it for over 10 years. If it gives you any idea of how sick I am of it and how irritating it is, my Fibro is secondary to the itch. THAT’S BAD!

Mary, I get those awful bumps too. They start out as tiny little itchy areas, like a dry patch on my leg & the more I scratch it, the more it spreads into teeny blisters that itch something awful. They just keep spreading & will stay for mos. until suddenly, they finally disappear. There is a name for the FMS rash, but sadly can’t think of it now. Someone yrs. ago gave me some liquid with witch hazel & a mixture of herbs that was a real help, but they have passed on & nothing makes the difference for me too much until it finally goes away on its own

sounds lie excema, go see a derm dr. I had it on y legs but turned outIwas allergic to the nickle in the chair legs. I have excema on my inner hands when I stress out. if u see little tiny bumps do not scratch them, it will only spread the exema and your body will have a memory for it. try cool gel pads or cold towel for 15 min. untilu see a derm Dr. just don’t itch it whatever u do.

B–You’re right about it getting spread by scratching it. My dematologist said it was excema, but it is something else, & the name of it eludes me now. I found it while searching one eve. about FMS rashes. Interesting how you figured out you were allergic to the nickle in the chair legs. Who would have ever thought! Thanks for the suggestions.

Mine are so bad that I have scars all over my arms and hands from the itch. Am now using presription LIDOCAINE gel. It numbs the area quickly… with no side effects.

I’ve talked to so many docs about my itching and they keep telling me to use plenty of moisturizer. It doesn’t help. I’ve tried changing laundry soaps too. Now I have an idea of what the cause is and know I’m not crazy. Thanks for mentioning this. I think my 7yr son takes after me because he’s been itchy forever. Glad to know there might be a cause behind it and that I’m not hallucinating.

I have had success with homeopathic Dolichos pruriens 30c, which is for itching of unknown origin. It even worked when I was struck with Allergic Dermatitis that felt like I had been dipped in itching powder (no reason found after testing), but I had to use Prednisone for 7 days to stop the reaction. The Dolichos diminished the itching, and continues to do so whenever I start to react. Also, nerve pain can be treated with Hypericum perf. 30c. I try homeopathy first because the remedies have no drug effect and no drug interaction. Safe and effective! I have not found anything that tames FMS, however.

I have Fibromyalgia and hypothyroidism and experienced this kind of all-over, under-skin, going-crazy itch when taking natural Armour thyroid hormone replacement.

I believe there is a significant connection between the hypothyroidism, the immune system and the Fibromyalgia. I’m hypothyroid because my immune system attacked and destroyed my own thyroid (autoimmune disease). My doctor and I reasoned that my immune system was allergic to the natural thyroid hormone in Armour as well, causing the itching. Interestingly, when I took synthetic T4-only Synthroid, my Fribro pain increased immensely, but no itching. When I began taking synthetic T3 +T4 Thyrolar, I had neither the itch, nor the pain. When I take synthetic T3 alone, I feel great for a little while after, and return to regular Fibro state and fatigue soon after.

This seems significant to me since thyroid hormone is utilized everywhere in the body. If one is allergic to natural thyroid hormone, then the allergic immune response will follow the hormone throughout the body and cause damage everywhere as well, I imagine.

Benadryl and Loratidine (Claritan) help in the meantime.

I get itchy too. The worst is the feeling that I have spiders crawling under my skin or over my face. ugh. I also break out in hives behind my ears and along my jaw line every evening. This is not related to any allergies – I’ve been tested for those.

NIACIN!

I just remembered that Niacin (B3) can make me itch like crazy, even when taken as part of a regular daily vitamin or Vitamin B supplement mix. I can itch at the low 100% daily value of just 20mg. Sometimes it can take 5 or 6 hours before the itch comes on, so it’s hard to make the connection between the symptoms and the source!

I agree Fibro can have some very squirrely symptoms, but hopefully the source of the itch is something within your control so you can avoid it!

Best luck!

I get the itchies and every doctor I have seen says it is “bug bites”, “dry skin” or many other things. I finally came across a combination that seems to help and the itching has decreased. No scented anything on my skin, incl. laundry soap, shower products and lotions. I currently use a lubriderm product that is fragrance free and for itchy skin. At night I have been taking one benadryl to help with sleep and then was prescribed valium for a muscle cramp in my neck, that night no itching. This lasted at least a week. I then would have to take out one item and the itchies cam back. I have done this many times and removing the valium, benadryl and keeping my skin hydrated appears to be the key to keeping it at least to a point where I can sleep, and not scratch sores on my skin. Hope this helps someone else.

My scalp is always itchy and it’s much worse when I am in a flare. I have tried all kinds of shampoos and products but nothing seems to really help. Makes sense it’s related to Fibro and the brain.

The upper left portion of my back, up by my shoulder, drives me crazy. I’m hypothroid.

I have always had eczema and thought the itching was because of it. But I also have fibromyalgia and have itching fits, often in the middle of the night. It feels like bugs crawling on me. I am happy to report that most of the time I can connect my itching fits to having eaten sugar that day. Sugar and popcorn are two triggers for me. I hope this info. helps someone else.

I have that feeling in my legs, restless leg syndrome, for which I take neurontin. It works. If I forget to take it, I can’t sleep. I also take alpha lipoic acid, which helps with shooting pain in feet. (600 mg/d sustained release. More at times. With food.)

I also experience the itch. It can be maddening. I agree with the statement to stick to suggestions 1-3. In suggestion 4 she mentions the use of Xyrem. I have been on literally hundreds of medicines in the past 15 yrs including strong narcotics such as Methadone, Oxycodone, Morphine etc. The worst medicine for one to be prescribed is Xyrem. I would love to know how about being an advocate against this medicine. I speak from experience. This medicine does not belong in the fibro pool. I would certainly answer any questions anyone has regarding this medicine. However I would prefer to do so in a private email rather than this public forum. Just let me know. Be well – Matt

Report it to the manufacturer. I was on Abilify and had to do that – one of the ‘unreported side effects’ was an increase in compulsive behavior, and being a compulsive gambler trying to stay clean was near impossible on Abilify. I had talked to a couple other people who had the same experience, so I reported it.

I had never experieced this as bad as i did in July. The upper shoulder or shoulder blade on my right side drove me crazy. To top it off i could not use the back scratcher because it was right on that bad tender point. My husband rubbed it slowly. It finally went a way after a month.

I get the infernal itches/pin pricks/tingles at night, while I’m trying to sleep, and as soon as I scratch one place, it moves to another place, rotating all around my body, often in several places at once. And I know it’s nerve-related, nothing dermatological-based (I’ve had dry-skin and heat rashes, and those feel totally different than this). The ONLY thing that helped relieve these itches was taking 10-30mg of Sarotex (amitriptylin) an hour or two before bedtime, to give it time to start working. I really can’t recommend it enough, but I’ve also heard that it doesn’t work for everyone, so my advice is just to try it (ask your doc about it, since it’s a prescription drug) and see if it works for you.

I do the same! I lay down everyday in the middle of he afternoon because of the back pain. When I’m amost asleep, the itching starts. I get a little itch on my nose, then my forehead, then my chin, then my right arm then the nose again, you get my drift. So I never do make it to sleep. I take Ambien at night so I can get to sleep before all that starts.

I was surprised to see this finally come up! I have tried everything! If I put ANYTHING on it, it makes it a thousand times worse! I have never been given meds for this particular problem. I have been to 2 dermatologists and an allergist and none know what to do for me! My only solution is a dangerous one; I take the meds I have plus benadryl until I finally fall asleep! For me it is pure agony and will continue unless I go to the extreme of taking meds! I’ve even been to emerg. and the doctors look at me sideways as if it is in my head and tell me to go home and take BENADRYL! LOL One day I will take too many meds! I hate to think what it is doing to my kidneys and liver. I now have a rheumy, an endocrinologist, 2 Dermatologists, an allergist, 2 neurologists, and even a shrink! I fired my GP because I felt he was of no help because he basically gave up on me even knowing what I was doing and now the new GP doesn’t really want me because he thinks I’m “doctor shopping”! I’m almost at the point where I just can’t take all these symptoms anymore. I have IBS really bad (constipation) so that for the first time in my life I have hemerroids! I have just been diagnosed with Sjogern’s syndrome (most of the day I can barely see because my eyes are so dry and I cough all the time). The pain is from head to toe! I am very temperature sensative especially to heat. I have severe arthritis in my wrists and knees. I have ringing in my ears for days on end along with a headache. My cognitive thinking is totally mesed up (short term memory and confusion). I have intermittent speech problems and I can’t find the words to get out. My co-ordination and balance are off And, of course, there’s the fatigue and lack of a good night’s sleep. I am having a hard time just getting through a day yet eveyone thinks I look fine and healthy!! I don’t know how everyone else gets through life, but right now I’ve about had enough!!! I wish I could find someone to help me!!

I know what you mean – I have had trouble with docs until I found the one I am with. I gave up on a barn full of docs and use only my GP unless I need some special test – and I fight tests like crazy. There are very limited treatments for what we have and I always ask what are you giong to do differently after the test/procedure (hypothetically)? If there isn’t any difference, I don’t take the test. PLEASE hang on and keep looking for reasonable GP who is willing to let you take charge of your health care. You need someone overseeing all the different docs and working as your advocate. I understand completely about the ear ringing, headaches, can’t find words, everyone thinks I look fine! I finally gave in and applied for disability after a vertebrae crumbled. Just realized I may have Sjogern’s, after losing a couple of teeth due to decay from dry mouth … it is an ongoing learning experience for sure. Hang in there, do what you can to care for yourself and don’t worry – we know you are ill, even if some folks don’t! blessings and all good to you – Cindy

My hands and arms are very prone to weird itching, especially at night. It is so intense that I can’t sleep until I figure out some way to control the itching. Ice has been a big help. I have also had to stop wearing jewelry. And I am a celiac so I have to be very careful out the types of soaps and lotions I use.
Regardless of the above solutions, if I have a stressful or physically exhausting day, I can plan on some ugly issue popping up, whether it’s intense itching, racing heart, horrible pain….the list goes on and on.

WhenI ate too much salt I would pay for it. the hands would ithand swell, and running them under clwaterwasallthathaeped.
sea salt is thesecret. neer itchor swel again. great for
when uhave yourperod too,noswelingbloating feeling.

I too suffer this mainly when overtired or stressed I get it on my lower arms and hands worst right across the knuckles drives me insane! After this it is usually followed by the sharp jolts of pain on the underside of my arms, a rather liken it to being stung with a cattleprod: short, sharp & painful!

I too have the itchiness on my back, arms and scalp. What I was looking to see if anyone mentioned and may not really be related is if anyone feels like they are getting bitten by small bugs that aren’t really there? I have this feeling but especially at night and it drives me crazy

I have been dealing with the itch for years! This is the first time I have seen anyone report the problem. and how to treat it.
For me the ice helps the most, and I take the medication. Bactine calms it down, and I use Hydroxyzine HCL.
I have had breakouts all over my body. One doctor told me it was caused by whiplase and he would need to do cut into my back of my neck. I never went back to that office.

Please be aware that narcotics cause itching as well.

Itching like crazy, lips swelling and wondering whether I am having an allergic reaction as I write this.

I’ve had severe itch and pain my whole life and was told it was growing pains and allergys and to just live with it well I have and it has only gotten worst. I was told 2 years after the birth of my first child that I had fibromyalgia. When symptoms came on during my pregnancy I was tested for everything and it was all normal as usual, or negative. Then the you have fibromyalgia and it made sense all the symptoms. When you put them all together no Doctor was doing that I’ve tried all kinds of medications and nothing works for me. I am very allergic to antibiotic and pain killers so I have a hard time. I basically have to live with the pain. I exercise and do alot of stretching, but that still doesn’t always help. I also had gastric bypass surgery because my weight was getting out of control and could not lose no matter how hard I tried nothing worked. I feel alot better but now my sugar is a problem keeps dropping and then spiking, (hypoglycemic). I had some bouts of low blood sugar before surgery, but it really has got worse since.does any one have any suggestions or any helpful ideas.

I have had problems with severe itching since I got Fibro-CFS 21 years ago. It felt like fire ants under my skin. If I scratched the top off the spot it felt better but I had dozens of small sores. It was worst on my rib cage both sides and on my arms and legs but no place was free of itching. I would check myself for shingles rash but could find none. Then finally last fall I did get a shingles rash not on the typical rib cage area but a spot on each arm and each leg. I went to the Dr right away and was given valtrex (expensive). I took it for 7 months and got improvement in the itching as well as with my other symptoms such as pain and fatigue. I think that our bodies do not handle our virus load and reducing it can give considerable relief. I like to use coconut oil on my skin right after bathing. It is very soothing. My evening itches are gone.

I’ve had fibromyalgia for at least 30 or more years – when I was much younger and before I was diagnosed, at times my body and especially my head would itch like crazy & I didn’t know what to do about it either. Much later, after I found out what my affliction was, I tried using Benadryl (liquid or capsule) which helped tremendously because I felt as though it was related to my hypersensitivity to outdoor allergens. I have also used Hydrocortisone 1% lotion, it helps while im waiting for the Benadryl to take effect. i do not use cheap shampoo either – in fact because of my hair loss due to my thyroid problem, I use Nutri-Ox (generic brand shampoo & conditioner for Ni-Oxin – use3d for hair loss). This helped my head itching quite a bit also…

I developed an itch on the lower part of my back, where no matter what analgesic was used, or ointment, it would not disappear. However, a blood test soon revealed that part of my ME/CFS was caused by the virus Varicella Zoster on the verge of erupting, causing a full blown attack of Shingles. Fortunately, using the antiviral drug Aciclovir for about four weeks eliminated the itch, an itch that has never returned.

How nice to see this topic come up. My left back, md-way below the shoulder has itched for years. Usually I have my husband scratch it, until it turns to pain. I’ll try the Benadryl and capsaicin, separately. Also get the spiders under the skin. I call it the creepy/crawlies.

I am also very glad this topic came up! I have had the itching problem, and at times have felt like it’s inside the skin, not on the outside. It’s so weird, and irritating. It’s happened a lot when I’m about to drift off to sleep, and makes me anxious then. My scalp has one particular spot that will itch, even though I know my hair is clean. I am comforted by the fact we can all share this crazy experience, and gain some insight by what others have tried. Thanks fibro friends!

Celiac disease causes symmetrical rashes on elbows, knees and sometimes other places. Symmetrical is the key word.

Parasthesia occurs in FM when stressors are activated, when allopathic/other meds are allergens to the person, when food and drink are incorrect and eliminations have not taken place especially. The CNS will only be able to ‘tell’ the site ‘chosen’ to annoy and become dysfunctonal the less proper attention of underlying causatives are sought. Treating EFFECTS OF SYMPTOMS is adding to the problems. Having said this, one v helpful aid is homeopathic staphaphraglic dosage c6/c30, 2 every 3-4 hrs until symptoms are under control and the patient has taken responsibility by finding a Naturopath who has Functional Medical illnesses knowledge and has graduated as such, a clinical nutritionist, an MD who has post grad Integrative degree, a complementary helathcare professional workingin the field of FM+ME etc. Sharon Levin-Head Fm South Africa + Holistic Prof Counselor/Consultant/Clin Nutritionist et al. http://www.fibromyalgiasa.co.za

I’ve had this since childhood and nothing helped. Never associated it with FMS because my dad also seemed to have the same problem. This will make me rethink how I deal with it. Only things that help are showering at night instead of morning (when my skin goes crazy with the itch!), and using a oil-based after shower moisturizer like Neutrogena Body Oil on my legs and arms rather than lotion

i also have the itchiness it feels as though something is crawling all over my body.i seem to suffer with most of the other related symptoms to fibro, i have cfs mps and most days i feel like i am falling apart, i also have had epilepsy since the age of four years old i am now 48 and developed fms after i was assaulted by a service user while working as a support worker, i have been unable to work now for two years since the assault.

My doctor recommended using a soft soap for my laundry and rinsing it in vinegar. It seems to help a bit.

I get the “itchies” every night and always assumed it was from the vicodin. I have heard about sulfates being a problem…maybe that’s what is causing the little bumps on my scalp?

Had the itch so bad once it caused scarring I”d itched myself til I tore off skin. Put on antibioctic then onto maintenance dose which I quit after six month. Now I have the itch that comes nightly which with cool clothes and ice I can manage. Wonderful to know their areothers out there. God Bless

I knew I couldn’t be the only one ,but geez…

I am blessed with FMS/CFS and Idiopathic Peripheral Neuropathy ( I do believe they are all part of the same disease ). It took me a few episodes of mindless,violent itching of my hands,foot tops, or lower legs, mostly hands , realise that topicals were doing no good and there was nothing on the skin surface to cause the poison ivy level itching that was happening.
I actually had a few synapses kick in and then decided that perhaps this was “nerves gone wild “, and if it was ,perhaps the Neurontin I take for nerve pain had worn away. The drug has only a 5 to 6 hour half life and I think the longer you take it, the shorter this gets. Or so it seems. When I washed off all the topicals I had put on in my frenzy, the cold water seemed to help a tiny bit. The Neurontin kicked in about 15 to 20 minutes later and the itching was gone. If it weren’t for Neurontin my nerve pain would leave me curled up in a ball in constant tears and agony.
I am quite convinced that the episodes of such horrible itching in my case are simply more manifestations of my wonky Peripheral NS, as evidenced by the lack of bites, rash or anything else that could cause itching.I have dealt with various contact and allergic dermatoses since I was a small child and this FMS itching just adds to the fun. I am lucky to have one of the most wonderful Rheumatologists in the world and she is very sympathetic and so on top of her patients’ medical and psychological condition.
I have not tried the homeopathic remedies mentioned by Sharon L. and Dean K. , but have written them down to discuss with her at my appointment next month.
I hope my adventures with itching might help someone else.

I use an aloe vera leaf from a plant we have. I split the leaf, rub the sticky stuff on the itchy place and it really helps…
Sara-Rivka

I’ve found some relief by upping the Omega 3’s in my diet. And I’m trying to minimize the Omega 6 oils like soy & corn oil, since they can be inflammatory. (http://en.wikipedia.org/wiki/Omega_6)

Right now, I’m drinking three tablespoons of flax oil daily, which makes me want to gag, but seems to be helping. I’m taking Spectrum brand (avail at Whole Paycheck). If you get it, try the cinnamon flavored one, which masks the flavor somewhat.

Mostly, I just try to keep educating myself. None of the “mainstream” advice seems to work. (Interesting interview here that goes into this.)

The simple fact is that no one will take care of us like we will.

I have fibro and psoriatic arthritis, I have had an itchy scalp for years and assumed it was to do with psoriasis though I am lucky enough to only ever had 2 patches of it. Looks like the scalp is fibro. I scratch till I bleed and also seem to get lumps (hence I thought it was psoriasis). I get itching patches on my skin but mostly only for short periods and not everyday. The funniest thing I think I have had with itching is in my ears. It definately only started after the fibro.. I have since read that the secretions of wax are different in fibromites… I was amazed, it certainly touches every part of us lol, hugs to all xx

I am on Neurontin which helps the nerve pain.

Thank you so much I thought I was crazy.lol It is that fibro saga again. Benadril helps cold showers and ice. So glad to read all the comments since I can`t sleep so well either…

I’ve been having “the all over-drive me crazy itches” for a verry long time, and could never figure out what was causing it. I’ve tried keepin track of what I was eating, thinking maybe that was the cause. So relieved to hear that it’s my fibro causing it, and how to help it.
Thanks so much for all of your comments and recommendations.

Hi I have been on chlorphenamine for 2 yrs was told the itchiness was side effect of tablets I looked like I had been beaten up with the bruising to my thighs and arms due to scratching had to go emergency clinic in end it was that bad thank you for clearing up the cause as I have changed mess and still suffer x

Has anyone else had a problem with a deep inner ear itching? It drives me insane, and i always wondered if it was related to my FM symptoms. Its so deep in the ear that i can’t even get to it half the time. I’ve had my ears checked (they were fine) AND flushed, and nothing helps it.

Thanks,
Nikki

Yes, Nikki, I have had that deep inner ear itching, and agree, it does drive me crazy! It is especially bad at night, so it is hard to sleep. I haven’t found anything that helps, either. Sometimes it gets so bad that I scratch the part of my ear that I can reach raw, and then have to put medicine on it to heal it, only to do it all over again. I am not happy to hear that you have this itch, too, but I am happy to hear that I am not the only one, and to know that it is evidentally from the fibro.

I have this problem, fibro people can feel their ear wax and it itches terribly. Do NOT use a Qtip to remove it, it crams it in further. To explore a solution, I got a regular hairpin, and vERRRRY carefully, slowly put the hairpin where the itch is (deep), move it around on top, take it out and wipe the ear wax off, stick it back in, move it around on bottom, and my gosh the ear wax that comes out is incredible. I keep doing it until the hairpin (old-fashioned kind our mothers or grandmothers used) comes out clean. No more ear itches til next week and more wax! Apparently fibros produce buckets of the stuff. Try it, see if it works for you. I’m sure I am gently touching the edges of the eardrum, but I have learned to be oh so gentle. This works!

I have had the deeeeep inner ear itch, as well as the bottom of my foot or top that can drive me nuts. I found that being allergic to some things caused the inner ear itching, like chamomile tea. I do have what everyone else is describing too & never gave it a thought either that it was all related. What else?? Lol. Hugs to all.

I find that benydral (spelling) helps me the most. As there has been time when I have itched myself raw. It seems to help calm the itching a lot.

Go to the health food store or a natualpathic doctor and get products that are natural for bathing, aawashing hair etc. detox baths help , 1 cup bakinggsoda (evens out PH, one cup hydrodrygin peroxide, (kills germs) and one cup epson salt as this brings down inflamation. I thought at lst this is just silly but now sometimes I do this several ps times a day because it helps so much. Bless you all, I got fibro after getting bit by a tick.

I use a OTC antihistamine. I take gabapentin (generic nerontin/Lyrica) and prednisone, but sometimes I have ‘break through’ itching. The antihistamine takes care of it – don’t know why, but it does. Hope it helps someone else.

I’ve had Fibromyalgia for about 31 years now. Originally they diagnosed it partly as Lupus. There are times when I itch so bad, it’s like there are bugs crawling on my skin. I usually take an additional benadryl and use topical anti-itch benadryl to help each the itching. Tylenol helps, but I have additional problems on top of it, so I take naproxyn sodium.

Yes I have them everywhere, the worst is my head and hands. I feel like something is crawling under my skin at times. I though it was my Psoriasis – Arthritis, glad to know that its nerve. My face drives me crazy at times.

I use to get hot spots on my legs and bottom of my feet. It was like someone getting a cigarette lighter close to my skin. It does not do it as often as it use to.

I take Zyrtec once per day. It seems to be the only thing that helps with the itchies. As with everything, some days are better than others and sometimes I still itch, but it does help. I’m also someone who can’t use the cheap shampoos, conditioners and soaps. Treseme (anti-breakage) is what works best for me for shampoo and conditioner, and I use Dial body wash (not with the beads or pearls it it – they make me itch). If it’s a really bad day, I keep some cheap, store brand bendryl around and take one of those. It helps for me

I am soooo glad someone has associated itching with Fybromyalgia!! I thought I was going crazy or had a bug or something else causing it! What a relief, just knowing I am not gong crazy or alone with this. I am sorry others itch, but now, I know it is another bothersome side affect of this awful disease. I have used a product, called BioFreeze, and it does help. I have also used an alcohol swap but it only stops infections. I have scratched so hard and often on some places, that I have made sores! Now, I will use the products mentioned and I hope others are helped by your putting this online! Thank you so very much!! Sue Jensen

The only thing that I found that has worked for me as I have had the same SEVERE ITCHING… is that I am taking
Gabapentin.. It helps with the nerve pain.. Pretty much nothing else has worked for me.

So glad to know I am not crazy. The palms of my hands itch all the time, annoying but not the worst. The part that makes me nuts are the little pin pricks that feel the same as the evil shingles. Never last very long but still surprises me every time.

OMG, I thought I was insane! Every night it gets worse – my back, arms, behind my knees…I thought I was crazy. I have tried everything and couldn’t figure it out. I had no idea it was connected to Fibro, which I have. My allergist thought I was nuts. THANK YOU – this is awesome to know!

I STARTED THE ITCHING RIGHT AFTER I WAS DIAG.IN 1997,WENT TO A DERMO.,AND CREAMS AND ASLL BUT NO HELP.I ALMOST WENT NUTS,THEN IT WENT AWAY FOR AWHILE.MY LEFT ARM WAS THE TARGET AND (THIS IS GONNA MAKE YOU LAUGH)ONE DAY I WAS SEARCHING FOR SOMETHING TO HELP AND I FOUND “VAGISIL” AND MONASTAT IN MY CLOSET SO YEP,I PUT IT ON ME AND IT HELPED SO I KEEP IT ON HAND!!!BENEDRYL HELPS AS WELL.I WILL BE FINE BUT WHEN I START TO RELAX AND GO TO BED I START.THE HEAD,LEGS ARMS AND ALL.IT IS A TOUGH ROAD WE MUST TRAVEL.

I don’t think you’re crazy – those meds are used for yeast infections & skin inflammation, so it helps both symptoms calm down a bit. Good luck!

For the last 3 years, I thought I was the only person in the world experiencing the awful itching. My gums even itch. My teeth turn to a sensation of feeling like metal in my mouth. I tried everything. I can take more benedryl (6 at a time) and zyrtec that other people would be sleeping for days. I changed my body wash to Burts Bees and my shampoo to Renpure Organics. They don’t remove the problem, but at least don’t contribute to it. I’ve been in the shower when the water touching my skin was adding to the itch. My PCP, who is the head of Internal and General Medicine in my local hospital spoke with his colleagues, and his answer was that no one he spoke with had any answers. This is the same doctor who doesn’t believe in ME/CFS…..It’s so infuriating. He believes I have chronic fatigue from depression (sound familiar???), but that it’s not an illness, which has changed my life entirely for the last 9 years. I wish that all people who are skeptics or non-believers live with these illnesses (”FM, ME/CFS) for just 6 months, and then tell me the hell I exist with doesn’t exist.

Getting back to itching, the body can only respond to one sensation at a time….so I’ve used numerous ice packs stratigically placed all over my arms, legs and forehead.

The best is the product “Biofreeze”. It works wonders temporarily.

I’ve changed my food intake, stopped vitamins….trying everything to pinpoint the source of the itching. It’s awful.

Hi,

I have had the itches on and off and most doctors just look at me like I’m crazier than I really am. Now, I know who is the crazy one, or sh/I say incompetant. If doctors are going to treat fibro, they sh/know the symptoms. Or at least look up the symptoms prior to treating the patient.

My head started to itch. I finally switched to head and shoulders shampoo and the itching is gone.

My ears itch alot most of the time. I use walmart’s anti itch cream on them.

I’ve tried every anti itch product on the market. Most of the time, the itching will be specific spots on my legs, arms, belly, neck. Each itching session has different itching spots.
The ointments don’t help.

My brother had nerve damage in his hand. He had itching so bad that his doctor gave him a medication to stop the nerve itching. I have had good results with it. My doctor prescribed it.

I don’t know if this is the generic name or not: hydroxyz hcl 10 mg tablet, 1 @ 4 times daily. It does make me sleepy, but it relieves the itching. Sometimes I’ll use the generic benedryl and get relief from the itching. Just depends on the intensity and the number of areas that are itching.

Just reading about all this itching is making me start itching now! Hope my comments help. Thanks for your comments. It’s the first time I’ve ever seen any comments on itching. Most doctors are unaware of all of the fibro symptoms. I had to show them that itching was one of them and this was when the symptoms list was about 40 and fibro had not been talked about as much as it is now.

Oh, yes, I also use ice, too. Jesus Loves YOU.

I had severe itching, too, all over my body. My arms and my hips and my ankles – it would start in one area and before I knew it I was clawing at my skin with no relief. I made an appointment with my dermatologist. He said that itching is usually from an internal source and isnt always able to be determined. He recommended that I take Zyrtec twice a day to help with the itching – because it usually is a histamine reaction. So far it has worked pretty good. I’ve been taking it twice a day for about 3 or 4 months and have only hac minimal itching which I usually can soothe with lotion.

Hi!

Well, it sure is good to know I’m not alone!! Unfortunately, I have yet to find an answer. Benadryl, Claratin and all the rest of the allergy meds have done nothing for me. In fact, I have taken as many as 6 Benadryl at a time along with my prescription meds and still not had relief until I fall asleep. I have been on clonazepam for years as well as other various mixtures of antidepressants and anti-anxiety prescriptions. Lotions and creams only aggravate the problem. I can only hope that when I finally go to see my rheumatologist in 2 weeks that he may have some sort of answer for me. Thanks to eveyone for your suggestions and support, it truly does help to know I’m not alone and not going completely crazy.

Hi,

I wanted to add that I used calamine lotion and had great results. Just don’t turn the bottle upside down and expect it to come out slow. It comes out fast.

Hope this helps you. Jesus Loves YOU!

FYI: I figure if people can use omg=Oh My God, referring to Jesus as a curse word, I can use Jesus Loves YOU because of the first amendment’s Freedom of Speech. Any others out there that believe the same? I’ve been banned from sites for using Jesus Loves YOU! I pray for those people, if you don’t want to be prayed for, then don’t ban Jesus Loves YOU!

Cindy

Gail, The “little bumps” I had on my scalp turned out to be a B vitamin deficiency. I am taking a B complex as well as liquid B 12 and at least that part of my problem is solved. Also because of the liquid B 12 my skin has darkened to a normal looking color. Hope this helps you. We are all so different. No pat answers for us.

I get bumps on my head too, I thought it was from stress. I too think I have figbro, haven’t been diagonosed yet. I also suffer from depression which was recently put opn cymbalta and abilify which i feel alot better, more energy. I’ve also had this warm feeling going down my leg, don’t know where that came from? I have severe pain in both arms now so i will see what the dr tells me..

So many stories I -and most everyone else, I see- can relate to, can give a name to! Whether it’s med-related; seasonal-related; nerves; hyper-tactile-sensitivity, etc etc – it’s a pain in the . . . . the everywhere! And a jumble of symptom easements, aids, coolants, even heat from capsaicin – - – yet, alas, no cures. And I’m being ultra cautious not to dig at my arms & legs when the little blisters of early eczema show. There’s already plenty of scarring on my arms & legs from itching, dammit! My mom used to suffer, too; called it her ‘nervous rash’ & would soak in an oatmeal bath! I always found that so amusing – mom floating in a big bowl of oatmeal cereal like the raisins I’d add to mine!!! Odd. Oh well – whatever we can find to help it; which is why I love this format to share problems and solutions! Read on -

drying myself with a towel and using body scrub makes me get an itchy sensation that both itches and feels like im an an FIREANT PIT I have to PAT DRY myself with the towel
NO RUBBING and CANT use body scrubs. Does this happen to anyone?

Sometimes is excrutiating, I have two remedies: one, fill the tub with water and add olive oil (few goutes) and take your bath, don’t use soap.
I buy a cream marvelous the name is ITCH perfect and quick.

Alpha Lipoic Acid is a great Antioxidant – fat and water soluble. But I use it for nerve pain, numb and tingling hands and feet and extreme itching. Doctors in Germany have been using Alpha Lipoic Acid (ALA) for diabetic neuropathy for more than 40 years. The Borne Clinic in Michigan and it’s sattelite, Crossroads Healing Arts, in Indiana, have recently been using an IV of 800 mg for nerve pain in Fibromyalgia patients quite successfully. I started by taking capsules (400 mg/day in divided doses) the first year, and now these last 12 years I’ve been taking 300 mg per day -each day- and have had NO itching, RLS, numb and tingling hands and feet or skin pain/neuropathy —for the last 12+ years! I also have the benefit of a great antioxidant working foras well!

One symptom of my fibromyalgia is an itch I can’t find. My arm or leg will itch and I can’t seem to find the right place to scratch. I’m sure there are other topical pain relievers out there, but Sarna works best for me. With the Sarna, you can cover a large area of the body so you are sure to get that itch. It doesn’t have a greasy feel either and it feels cool to put on. I can never thank the pharmacist enough that told me about this stuff. It really works.

For the last 8-10 months I’ve had a very scratchy throat which makes me cough. Before, I took Benadryl and after a month or two it went away, so I figured it was some kind of allergy season coming back. But now it’s been so long this time… I’m beginning to wonder if it’s ever going to let up. I only take a Benadryl at night and sometimes I wonder if I’ll be able to wait til then.

Maybe this is another beautiful symptom of this lovely illness. We never cease to be amazed, truly…truly.

I have fibro so bad that I was going crazy with burning and itching..Took ice packs to bed every night to try and cool the heat…Used castor oil and it helped some..My bones ached all the time..
My naturalpath gave me Enzogenol( pine bark extract) Sometimes it is under the name Navitol…I take it after dinner and I sleep like a baby..
He also checked me foor heavy metals and I had alot of lead in my body.He gave me 3 supposittories Xeneplex and the lead is gone..As soon as i used them I started feeling better.The body cannot heal umless you get to the root of the problem.
Now for my skin I use ” GLOVES IN A BOTTLE ” It is amazing my skin is showing fabulous results in only 3 days…You have to use such very little of it , it is a shielding lotion…I bought all of it at Bashes pharmacy in Arizona and ordered some more to take back home to Canada with me …$10.00 for 8 oz..I finally have my life back,feels so good…Drs could do nothing for me…Hope this helps….Happy New Year to all Fibro suffers…Faye

Hello all FMS folks, it is amazing all we go through with this, horrible, we hurt all the time, have to consider everything we do, or better yet, the outcome, of what we do, most of of don’t sleep well and when we do to be woke up by itching, unbelievable!!!!! I have itching at all times now not just at night sometimes lasting for days at a time with no let up, it seems we have tried all of the same thimgs, really with no real results, but to add to the list of temporary solutions try oatmeal baths, with luke warm water, hot water only makes you itch more, do not put anything else in the water and I know this may sound crazy, but do not use any soap or rub your skin, just soak, when you get out dont rub yourself dry, pat yourself dry lightly. Like most of you have said it is good to hear from others whom are going through the same thing, don’t get me wrong I would not wish this on anyone, but it is helpful to know that you are not alone, and even though we dont know each other,we can be there for one another in times like these.

I am always itching, the worst areas for me are my head and my feet, they can drive me insane some days

I have been going crazy with itching! Nothing works,not even benadryl. Cornstarch offers some relief! I tend to itch anywhere that I perspire. Lower back, under arms,under breasts,crotch etc. I just decided out of the blue to do a search of fm and itching not expecting to get a hit,boy was I wrong. Will try taking something for pain see if that helps,haven’t been able to get in to my doctor yet but will be going there as well.

I have the itching it drives me crazy.Have tried itch relief cream to no avail.

Cannabis stops the itching for . However, I live in Texas, the Bible belt butthole of the USA. And far far away from the sensible folks on either coast. It is an atrocity that people go to prison – PRISON – for using or cultivating an extremely useful medicine that would grow wild and be free for the taking. If I use marijuana to ease the extreme pain of fibromyalgia; the out-of-the-blue insidious awful ITCHING, I am a criminal. A dirty drug addict. Pothead. Law breaker. Prison bound.

My understanding is that the powers that be in the healthcare BUSINESS need to synthesize dangerous drugs in order to make their money money MONEY. Healthcare is rotten in this country. Especially for women. I’ve been through so much “it’s all in your head” dismissal on account of my gender to span ten lifetimes.

For me, around 6 Xanax can help stop the itching, but that leaves me short at the end of the month and having to detox the drug and feel horrible.

Nobody overdoses on marijuana.

A cool swim in a pool (if you have one — I don’t) or a cool bleach bath sometimes does the trick.

Legalize medicinal marijuana in all of the U.S!!!!!!

must check louis vuitton discount suprisely

I too suffer from FM and have my entire life… Neurontin helps but is a very dangerous drug over a lifetime of taking it. My Mother developed seizures from it ..taking it for RA. Like the above post Canabis would help but not legal where i am either. The itching is horrible. Spider web feeling all over and then feels like being bit by something on various locations. Docs have me on Valium and Zyrtec for it which only helps by putting me to sleep. Long term Valium use for me is not good as i have reations to it like every other drug. I am allergic to Benedryl for Gods sake! All pain pills make me sick. Never have tried Lyrica as have been on Paxil for 15 years and afraid of other meds..
Chiropractic care helped me the most and kept the TMJ at bay but is too costly.. running out of options.. seems i am EVERY symtom of Fibro Forever :/

I have MS, lupus, sjorgrens, ehlers-danlos, fibromyalgia, chronic fatigue, diabetes, I get staph infections, and a few other less worrisome problems.
I have had extreme itching for over 14 years. 13 years ago I begged my doctor for help and she found something that works. This I found is from the MS. I take hydroxyzine originally I started at 25 mg 3-4 times a day, I am now at 6-9 a day. It controls it. Nothing over the counter works, same as the home remedies. I have scars all over my body. Main itching is left shoulder and down the left side of my back, arms, and face. I put the clindamycin gel that I have for the staph infections on every spot, all day. The only thing that helps a little is cold showers, but when you get warm throughout the day, then that doesn’t work anymore. Laying on ice pads helps everything. I also take lyrica for the severe tingling from the MS. This is like taking a needle and stabbing me. That works as long as I take it twice a day. It doesn’t touch the pain from the fibromyalgia, like the ads say. The neurontin stopped working at 3600 mg a day. Plus I am allergic to all pain medicine, everything so I really deal with the pain. All pain meds cause me to itch. I deal with the fibro by ignoring it and concentrating on the more important problems. That is not to say it doesn’t hurt, it does. I was diagnosed in 1984. I was diagnosed with the MS in 2001 after looking for 16 years and seeing an MS specialist in neurology. I now have really bad tremors in my voice and hands, but look at life as it could be worse and there is nothing you can do about it. There are worse problems out there. This too shall pass.