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Allodynia: Fibromyalgia Skin Pain

Alloydnia: Fibromyalgia Skin Pain

Do you experience pain from a simple touch? Do you cringe when someone goes to give you a hug? Do these simple gestures result in excruciating pain? Skin pain is another one of those fibromyalgia symptoms that just doesn’t seem to make sense. This type of pain is called Allodynia and is usually felt as a burning sensation.

Allodynia is believed to be a hypersensitivity to stimuli that would normally not cause pain. The pain can be provoked by a light touch to the skin, pressure from clothing, showering, combing or brushing your hair. Even a light breeze blowing across your skin can feel like agony.

What Causes Allodynia?

Allodynia is considered to be the result of a process called central sensitization. The pain comes from a malfunction of specialized nerves, called nociceptors. These nociceptors sense information about things like temperature and painful stimuli right at the skin. For some reason, our nociceptors become chronically activated and send persistent pain signals. Any sensation felt by the skin becomes painful.

Allodynia is a fairly rare type of pain. It is only associated with a handful of conditions. These conditions include fibromyalgia, complex regional pain syndrome, neuropathy, postherpetic neuralgia (shingles) and migraine. Allodynia is also linked to the lack of restorative sleep.

There are three sub-types:

  • Tactile Allodynia: pain caused from something touching your skin.
  • Mechanical Allodynia: pain caused by movement such as your clothing brushing against your skin or the breeze from a fan or the wind blowing across your skin.
  • Thermal Allodynia: pain caused from mild heat or cold temperatures.

Allodynia often overlaps with hyperalgesia (abnormally heightened sensitivity to pain), which seems to be the case with fibromyalgia. So not only are we experiencing pain from stimuli that should not cause pain, the pain is amplified.

Treating Allodynia

The skin pain comes from a malfunction of specialized nerves. It is also related to a lack of restorative sleep. Standard treatments for fibromyalgia can also help ease allodynia. This includes eating healthy, exercising, reducing stress and improving your sleep.

Medications that work for some people include:

  • Tricyclic antidepressants (amitriptyline, desipramine, doxepin, imipramine, nortriptyline)
  • Lyrica (pregabalin)
  • Neurontin (gabapentin)
  • Lidocaine patches

Some people also get relief from topical pain creams. You may have to be careful about the way you dress, as well. Loose fitting clothing made from soft natural fibers are recommended

If your skin itches, burns, tingles or you have numbness, it could be a condition called Paresthesia. It’s also seen in Fibromyalgia and migraine patients. The sensations are usually felt in the hands, arms, legs, or feet, but can also occur in other parts of the body.

Painful skin is a new symptom for me. It seems to be triggered by temperature. It doesn’t even have to be hot. When I feel a little warm, my skin starts stinging and burning, then anything touching or moving across my skin intensifies the pain. Being exposed to the sun makes it worse.

My doctor increased my dosage of amitriptyline and said if that doesn’t help we would try gabapentin. It’s been three weeks since the dosage increase and so far it hasn’t helped. Since summer is almost over, I am wondering if the skin pain will lessen when the weather gets cooler.

Or is that just wishful thinking?

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Alloydnia: Fibromyalgia Skin Pain

88 comments… add one
  • This condition does not affect me all the time but when it does it is so painful and random. I get all the three sub-types of allodynia you mention. I do live with Paresthesia in fingers and toes all the time. Of course I have had all the tests and drs can find no reason! Don’t you just love Fibro!!!

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    • I have only been experiencing this for a couple months and I am really hoping that when the weather gets cooler that it won’t be so bothersome. Fibro sure doesn’t let you forget it’s there. You think you are getting some control then it throws something new at you.

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    • Gotta love all the “medical “terms that Fibro helps us to amass….as if we don’t already feel hypochondriac enough when asked about what’s wrong with us….LMBO!!! Not… :-/

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  • i have had fibro for about 5 years. just recently i had the added pleasure of having my butt and the back of my legs feeling like they were ON FIRE !!#!!#!!, in addition to my other symptoms of fibro. luckily, i had some VOLTARAN that a doctor had prescribed for other aches and pains, and thought to put that on. it cooled it down and while it was only a stop gap solution, as you know anything that helps is welcome. i think the worst of it is over, but i had a looooong week+ of real searing pain – i kept thinking about burn victims and what they go thru

    Reply
    • Gotta love fibro, you never know what it going to throw at you next. Seems like most everything we use for fibro symptoms are just stop gap solutions. I have a whole house full of them. And you are right – any relief is welcome. Sometimes the symptoms are so weird and random it makes me wonder if I am losing my mind sometimes. Thank God, most symptoms come and go. Kind of puts thing in perspective thinking about burn victims.

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    • I haven’t been diagnosed with fibro, but my doctors are trying to figure out what is wrong with me. My back, butt, and thighs feel like they already burning when I am sitting or laying in certain positions. This has been going on for almost 2 years. I have tried many medications and currently take Horizant, an extended release gabapentin. Any other ideas for relief? Does this mean I have fibro?

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      • My life was a complete misery with tactile and mechanical Allodynia then was put on a combination of diazepam & Tizanidine I still get the odd twinge but nothing like the misery I was in 2 years ago when I was reduced to screaming/sobbing with uncontrolled stabbing pain in buttocks groin and upper outer thighs, can no longer wear jeans, trousers, leggins etc only skirts, I take 5mg Diazepam three times daily and 28mg Tizanidine daily this combo is the only one which had an impact on the Allodynia previously tried, Gabapentin, Amitriptyline, Lyrica, Cymbalta, I even gave myself frostbite I was using so many freeze gel packs just to numb my body from the non stop excrutiating pain it is an awful symptom to have with no definitive answer for cure, management or treatment.

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        • I can’t wear jeans or pants either. Leggings sometimes I take cymbalta but it doesn’t take it all away.

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        • Are there side effects to the Diazepam and Tizanidine? I’m at my wits end with Allodynia and am a little nervous about taking the drugs since I have high blood pressure and atrial fibrillation.

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    • Voltaren Gel has been my go to med for shoulder pain, my wrists, hands and joint pain for 7 years. Be careful and do not use it too near or on your spine.

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  • So happy you have validated me on this subject. My family and friends thought I was making this up. Thank you!

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    • Your welcome, I am happy to help.

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  • I literally have all of what you are talking about!! Its so bad I carry a sun umbrella with me because any direct sunlight and my skin feels like it’s burning off. Even a soft dress touching my skin causes agony. I rarely go outside if the sun is out and the pain from holding my children feels like they are tearing my skin off… It is the worst pain a Mother can go through. It tears me up just typing this. I have been on all the meds you described, but the Gabipentin seems to have worked the longest. But I am now maxed out on it after 4-5yrs. of being on it and I am terrified about what will happen when it stops working… I hope it works for you better than it did for me! But I can say it did help in some areas.
    Be well and God Bless you for sharing your story.
    My diagnoses are – Vascular E.D.S., Fibro, Sacroiliac joint dysfunction, MGUS, Trochanteric bursitis of both hips, Mixed hyperlipidemia, ect…

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    • Hi All!

      Two years ago I underwent back surgery for a bulging disc and the removal of a lead off of my spinal cord from a Spinal Cord Stimulator. A few weeks later I developed this hellacious disease. I’ve been on many drugs since then but Cymbalta seemed to help the best. But, now we could no longer afford our insurance and I’m having to pick and choose which drugs we can afford. I’m on 90mg of Cymbalta and it costs $354.00. Ouch. One word of warning if you ever try Cymbalta. The withdrawal symptoms are nasty. So, here I go going down 30 mg per week. Then I’m going to try Nortriptylin 3 times per day. Right now I got out of bed to let the dog out and I’m shaking so bad that it triggered a major attack of skin burning and feeling like it’s ripping off. I do feel for any burn patient or anyone with this diagnosis. I’ve been out of work for almost 3 years and am still fighting our lovely Social Security System. You’re right! The wind, the shower, your clothes or bed sheets hurt so badly. How could anyone work with pain like this. Living in daily pain.

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      • Annette, I am so sorry to hear about your struggles. I was on Lyrica when we lost our health insurance, at the time it cost $600 a month which I definitely could not afford. The horrible withdrawal symptoms from Cymbalta are well-known NOW and I am so sorry you are going through that. I could not take it because it is too hard on the liver which is another thing they don’t always tell you. I had disc surgery on my neck so my neck and right shoulder seem to be where the pain is most intense. I am also fighting the social security system. I don’t know how they can think we can keep working with pain, fatigue, brain fog, dizziness, etc. It’s hard enough just trying to get through the day sometimes.

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        • Fighting social security?? It helps if u claim depression and see a professional as well. That’s who helped me, my therapist. If u have a mental disorder your in faster than not. We all have illness related depression!! It does really get u down, I have been diagnosed with fibromyalgia going on 17 years now, I can tell you it doesn’t get better. I also have degerative disc disorder, buldging discs, and spinal stenosis in my neck and thorasic spine. I’m in pain management and have been 16 years. I have been on every combination of medicines u can think of. I find not staying on any of it too long, because trying to get off if it is hard. I now get assistance from Pfizer for lyrica, it comes in the mail right to my house. Every doctor has paperwork to fill out for assistance from drug company’s. I wish u all the best. Good luck and may god bless you!!!

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          • Hi, Terri. I have heard that it helps to stress the depression. Thanks.

      • I am so sorry to read about your suffering but on the other hand I am glad that I found your post. I am not crazy! There are others out there! Six years ago, after finishing a round of the antibiotic Cefdinir, I suffered an extreme episode that came on suddenly. My turned red and burned. When it was burning it was itching. I could not sleep or rest at all due to the intense pain. The doctor gave me Prednisone and a steroid cream. Over the weekend I realized this course was not going to agree with me and the cream induced severe urticaria that began to spread up my neck toward my face. I did not experience any relief until a few weeks later when a dermatologist gave me Dechadron that stopped the severe reaction.He told me not to use anything on my skin except Vanicream products and Ivory soap.I could not stand for anything to touch my skin. This made it very difficult to dress or lie down in bed. As the Dechadron entered my system the condition began to clear up and my sensitivities were lessened somewhat. Even now, six years later I have to be very careful about sun exposure. I am still using the Vanicream products. They are very soothing to the skin. When I fear a reaction is starting I use baking soda in my bath water. I take 15 mg of Venlafaxine each day. I live in fear of this happening again. Thank you for sharing your experience. I pray that you find relief. Deb in Kentucky

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      • I once lost my insurance and contact the medical co that made cymbalta ab fir 3 yrs t h ey sent my medicine for free.

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      • If you cannot sleep due to your condition, file your disability for insomnia due to irretractable pain. That is how my lawyer got mine approved. I suffer from lupus, and many other invisible diseases. Even after my doctor pulled me from work, I didnt get approved until the attorney went at it from a diffetent angle. I just had my 2 year evaluation and am approved for another 3 years of 100% disabled. I wish you luck with this.

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      • Please all of you…get our Vita man D levels checked… it is universal that all who have been suffering symptoms of and or diagnosed with Fibro all have very very low D.. and that makes the pain so so much worse..once D is up even a little you will feel the difference..pain not as bad. i hope you all get tested and prescription D ..if not plz go get OTC D supplements… you wont believe the difference..not cure but it sure does help.

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      • I’m so sorry you are dealing with this too! If it helps any, I understand. My skin has hurt for 30 years. I have had sun problems for 30 years with reactions to chocolate, polyester, and chlorine. I’ve been tested for every disease known to man, but now that I have uncovered this ailment, everything makes sense.
        I’m writing today to mention Costco as a source for your medicines. I’m not sure if there is one in your area, but you don’t have to be a member to use their pharmacy. My doctor told me about them 25 years ago and they saved me a huge amount until I was able to get insurance again.
        Hopefully this helps! I feel your pain!!

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  • Hi, Melissa. I could not imagine going through all this when my children were young. I was lucky in that respect, my youngest was in high school when I was diagnosed. It was hard sometimes when my grandchildren were little but I didn’t have them all the time. I held off on the gabapentin and now that the weather has changed the allodynia isn’t so bad. I held off because of the tolerance we build up to medications over time. God Bless you.

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  • I get all of these types of skin pain. I also used all of those pills and the patches with zero help and a crap ton of side effects so I stopped them and just deal with it the best I can because I won’t be a zombe anymore from the pills.

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    • Hi Kathy. I still take amitriptyline because I can’t sleep without it, but I decided not to take the gabapentin. I agree with you about the side effects. Luckily the skin pain is not too bad unless I get overheated so that’s not happened too often since it’s winter. 🙂

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  • For decades my feet would get burning hot when I was warm, and, when I was cold, it still happened very night. This was when I was a vegetarian. I haven’t had this problem now for several years, since I stopped eating vegetable oils, nuts and seeds, except for some avocado and coconut oil. Now I eat mainly butter and I have a lot of chicken fat (soup, skin).

    There’s a simple explanation for why the pain stopped, as I have since discovered. I learned that, as a N. European, I don’t have the enzyme, delta 6 desaturase, that is needed to metabolize the omega 6 fat in plants, so they turn into free radicals that have been identified as the cause of chronic pain. http://www.ncbi.nlm.nih.gov/pubmed/26041925 At the same time, chicken fat supplies the fully metabolized omega 6 fat, arachidonic acid, which gives us the cannabinoids that relieve chronic pain. So, a combination of butter and chicken fat seems to be working very well-I would highly recommend it!

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    • How much of each Ann’s how often?

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  • I have this condision so painful

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    • Here’s a study showing that plant fats in vegetable oil, nuts and seeds cause pain (they’re inflammatory). So, first of all, they must be eliminated completely.
      Researchers at the UT Health Science Center found a new family of fatty acids, produced by the body itself, that play an important role in the biology of pain.
      “Capsaicin is an ingredient in hot chili peppers and causes pain by activating a receptor called transient potential vanilloid 1 (TRPV1). We started out seeking the answer to the question “Why is TRPV1 consistently activated in the body upon injury or painful heat? We wanted to know how skin cells talk to pain neurons,” Dr. Hargreaves said. “What we found was much more surprising and exciting. We have discovered a family of endogenous capsaicin-like molecules that are naturally released during injury, and now we understand how to block these mechanisms with a new class of non-addictive therapies.”
      “We found that in the skin flaps heated at greater than 43 degrees Celsius, the cells’ pain neurons showed tremendous activity in the wild type, but not in neurons from mice that lacked TRPV1,” Dr. Hargreaves said. He indicated that this novel phenomenon was taking place because the cells, in response to the heat, began to create their own natural endogenous capsaicins, which they later identified as a series of compounds or fatty acids called oxidized linoleic acid metabolites (OLAMs).

      Linoleic acid is one of the most abundant fatty acids in the human body. Under conditions such as inflammation, low blood pressure and some other illnesses, linoleic acid is rapidly oxidized to form biologically active metabolites. However, little else is understood about these substances. The metabolites that were consistently seen in increased amounts in the mouse skin biopsies exposed to heat temperatures greater than 43 degrees Celsius are called 9- and 13-HODE (hydroxyoctadecadienoic acid).

      ‘Major breakthrough’

      “This is a major breakthrough in understanding the mechanisms of pain and how to more effectively treat it,” Dr. Hargreaves said. “These data demonstrate, for the first time, that OLAMs constitute a new family of naturally occurring capsaicin-like agents, and may explain the role of these substances in many pain conditions. This hypothesis suggests that agents blocking either the production or action of these substances could lead to new therapies and pharmacological interventions for various inflammatory diseases and pain disorders such as arthritis, fibromyalgia and others, including pain associated with cancer.”

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      • It’s been 16 years for me with fibromyalgia. .and still hard to deal with.i take 10 pills a day…some for depression. .pain n sleep…nothing really helps and have flare ups that last for days..God help us all who suffer….

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  • That’s for sure! When I was eating a lot of nuts and seeds-high in omega 6 fats-I had terrible burning foot pain every day, for decades. I haven’t eaten any nuts, seeds or vegetable oil of any kind for about 4 years, and I never get that pain anymore. That’s why I put it up, not as a medicine but as a way to explain what’s going on, at least in part, and how you can probably lessen pain by eliminating vegetable oils, nuts and seeds from your diet. I only eat animal fat now-butter, fatty fish, homemade chicken soup fat, and I’m much more positive about life now!

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    • Hi Joan,
      How long did it take for you to see a decrease in your pain levels? I don’t have fibromyalgia, but I do have allodynia, both legs. Clothing is a nightmare. I feel like a freak. This pain serves no purpose whatsoever.

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  • I have had the pain do bad that just taking a shower and trying to dry off with a towel is agony!! Then putting on clothes is awful would rather not wear any!! My Dr prescribed Lyrica it has helped, but sensitivity to cold and hot is still terrible and the tips of my fingers and toes with the tingling sensation is awful too!

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  • Omygoodness YES! I have complained of this symptom as being one of my worst fibromyalgia symptoms. I can bump my arm and it causes my body to feel as if it were on fire or severely burned. I can be stressed and have the same intense feelings of being burned. Not a symptom most understand. My husband remembers even before my fibromyalgia diagnosis, me constantly saying, “It burns!” He could never understand me describing pain as burning until after my diagnosis. I thank you kindly for this information. Sometimes putting a name on what you’ve known to exist but can’t explain, it helps 🙂

    Reply
    • Hi, Tressia. Thanks for leaving a comment. Until I started this blog, I kept a lot of my symptoms to myself because they sounded crazy and you often wonder if you are. It helps to realize that other people are experiencing the same thing. It may not make the symptoms lessen but it makes you feel a lot less crazy. I am much more open now and care a lot less what other people think. We know it’s real.

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  • I have FMS and CFS dx 20yrs ago and 2 buldging discs! The sensitivity I suffer affects most if not all of my extremities! However recently my back and soles of my feet are causing me excruciating pain!
    The water hitting my back in shower is causing me to fear having one!
    When i walk from my first step it’s like walking on pebbles! Don’t know where to turn as the overwhelming fatique is more than enough to deal with!
    I would welcome any views or suggestions.

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    • Hi, Joy. I am so sorry to hear how bad you are suffering. Have you tried soaking in an epsom salt bath or using a tens unit? The magnesium in the epsom salt will relax your muscles. If getting in the tub is too uncomfortable you can just soak your feet in epsom salt. And a tens unit might help with the back pain.

      Because of the bulging discs I am hestitant to suggest anything that might make it worse. I had disc surgery on my neck but I still have a lot of pain from the middle of my back up to my shoulders and neck. Every so often I go to physical therapy and I use a foam roller to massage my back and neck almost every day.

      Showers used to be painful until I replaced the shower nozzle with one that conserves water. It made a big difference. Now the shower feels good instead of causing pain. Bless you.

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  • Stay out of direct sunlight. Even riding in a car if my skin gets in the sun it’s starts feeling like it’s burning. I have my windows tinted as dark as legally possible. It does help. Except my hands on the steering wheel. Going to try light gloves.

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    • Hi Kathy. The sun is a killer. I want to a white long-sleeve cover up I can throw on when I am exposed to the sun. It has to be the right material because if I start to feel too warm, even without the sun, my skin stings. Lately my hands and feet feel hot all the so gloves would probably make it worse. Hope the gloves work for you.

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      • Hi Sue, It is so good to hear of someone who understands what I have been struggling with for 30 years. Most think I’m nuts! But I’ve always known that something had to be causing my pain. I have things that cause my skin to burn instantly: chocolate, chlorine, polyester, and stress. But the sun is the worst!! As of last October, I can no longer tolerate sunlight at all. I’ve covered up to go from shade to shade, but now going outside is no longer an option. I know it isn’t any other disease, because I have been tested for them all and everything comes back negative. My fibromyalgia treatments helped a lot, but now Flexeril keeps it at bay unless I see sunlight. Is yours this bad? How much sun can you tolerate?And is there anything you’ve found to help?
        Thanks!
        Amber

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        • Hi, Amber. The sun only bothers me in the summer. Any other time of the year it doesn’t bother my skin at all (so far anyway). High humidity also causes my skin pain even without the sun. I never know how much I can tolerate. So if my skin starts burning as soon as I walk out the door, I know I might as well go back inside, cancel my plans and stay indoors. Other than staying in air conditioning, I haven’t found anything that really helps. If you are nuts I am right there with you. LOL

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  • Would love to hear more about this. I have several other conditions, as I’m sure most of you do, that have similar experiences.

    Thank you, all.

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  • Gabapentin really helps with symptoms. I am currently on it 300 mg/ 3 times a day. I don’t have as many painful days while on it. Acupuncture also really helped but was pretty expensive. Good luck in finding what works

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    • Hi Kristen. I am glad to hear that gabapentin helps you. It’s too bad alternative treatments like acupuncture are not covered by insurance. I am keeping an open mind when it comes to gabapentin. I just don’t want to be over-medicated like I was in the past. Take care.

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      • I am a paraplegic with many of the symptoms many of you have discussed above. I am excited to try the dietary changes suggested to see if they will help relieve my almost constant, severe neurological pain. Some have talked about benefits with but problems associated with taking gabapentin. I too have tried it without being able to tolerate the side-effects. Fairly recently my doctor prescribed Gralise, which is a timed release version of gabapentin but has almost none of the negatives. You might want to try this if gabapentin, in its older form, both helps and hurts you.

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        • Hi, Maxie. I hope the diet changes help. I am going to ask my doctor about Gralise. Thanks!

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  • January 2016, I woke up with a burning scalp which subsequently spread to all over my skin. I can’t sit or have any pressure on my skin without burning, tingling, itching and/or scraping. Heat is also a trigger. Dr.’s posit that this was a result of prolonged head lice from my daughter (which I didn’t know I have for 2 months) and that I am in a reactive inflammation response that continues despite the trigger being gone. I have tried all of the neuropathic drugs which have not done anything except side effects. A new dermatologist from UCSF has recommended Doxipene and a ketamine cream. I have decided not to use due to the side effects. I was able to get him to order low-dose naltrexone used for pain conditions. I understand it is free of side effects and is prescribed by many functional medicine Dr.’s. I am particularly interested in the article posted about the possible role of nerve growth factor (NGF) and am researching this and wondering if the person who posted this has taken any medications to treat her condition other than addressing through diet changes, no nuts or seeds. I am also curious to know if anyone knows of a Dr. of health care practitioner who has some expertise in tactile allodynia. Thank you.

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  • I have all the symptoms you all talk about but I also have swelling in my hands and feet cant bend my fingers. I have extreme pain in my hands and feet especially in my fingers and toes. I think I have arthritis to. I’ve been dealing with this for 8 years. I cant write anymore due to the swelling. Some days I cant walk due to swelling and severe pain. I’ve tried everything finally a year ago they put me on lyrica which was a god send but now im up to 150mg three times a day, the lidocaine ointment seems to help a lot and believe it or not the migraines I get I cut the lidocaine patches up and put them on my forehead and cheeks that helps too. So if you don’t have it ask your Dr. for lidocaine patches and ointment. Trust me it helps. Any relief is welcomed. I cant live like this anymore my hands and feet get so numb, painful and tinges so bad it forces me to get out of bed in the early morning. I miss my walks with my daughter, I cant do that much. Mine stems from severe uncontrolled type 1 diabetes. I’m so afraid I’m gonna loose my hands and feet or fingers and toes. I’ve developed ulcers on the heels of my feet and on my thumbs. It hurts so bad and I’m so embarrassed when I go out by the looks of the ulcers on my fingers and palms of my hands .I’ve been to so many doctors I love my foot Dr. but cant find a good dermatologist. I have my neurologist helping ,me now. have to go for and MRI on my hands and feet next. Does anyone know of any other types of tests? Just in case I haven’t had it yet.Well I hooe everyone here gets better!

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    • I hope you get better too, Dawn. I know the ulcers are from having diabetes but did you have the swelling in your hands and feet before you started taking Lyrica? Because swelling of the hands and feet is a side effect of Lyrica. I am not sure about the numbness. I will ask my doctor about the lidocaine. Thanks for the tip. I bet they do help migraines. Sometimes I use capsaicin on my forehead. I really hope the neurologists finds a way to help you. Good luck and bless you.

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  • Who knew just rolling over in bed could be so painful. I have constant spasms in my back and shoulders. Ugh.

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    • I hear you Sindy. If I lay on one side too long my hip hurts. If I lay on the other side my neck and shoulder hurt.

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  • Hi Fibrodaze,

    I do not have fibro but I do have MS which has some strong similarities.

    I have never experiences skin pain, although I do have many other inexplicable pains.

    Keep up the good work, I love your blog.

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    • Thank you, Stephen.

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  • Every inch of my skin feels bruised. Winter dry skin and eczema is torture. Hugs and gentle back rubs are agony. I had to stop taking gabapentin because I was missing pieces of my memory from it. I just wish this would end.

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    • Hi, Cait. My doctor suggested gabapentin but so far I have declined because I don’t want to deal with the side effects. I have found that a lotion with CBD oil in it helps with pain, dry skin, and eczema. 🙂

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      • You might want to consider Gralise, which is a time-release version of gabapentin, but much easier to use with almost none of the negative side effects.

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        • Thanks for the tip, Maxie.

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  • I began my symptoms after being hit with some other medical problems which seemed to kick it off and that was 25 years ago but there was no name for the condition and drs. didn’t know what to think. Over the years symptoms have changed from severe pain in neck, shoulders, and but now it’s seems to have spread throughout my body and not being able to even touch my lower back,hips and thighs. I have lumps underneath my arms and legs and develop nodules which have had to be removed due to increasing size. Weather does play a part but stress is a killer. It’s seems to increase the flare ups. I only have burning occasionally but walking just a short distance is getting to be almost impossible.
    The biggest problem is i can’t take many of the meds due to allergic reactions or possible internal bleeding due to other health issues so I usually just suck it up and take a few over the counter meds. It’s does help to go to the chiropractor which my insurance will cover. Also a reflexologist has helped and she suggested I take magnesium with malic acid which also helps. Malic Acid is a natural pain killer actually it’s a form of pectin. I also have a friend that was in an accident on her honeymoon and has suffered for Fibro ever sinse and says stress really triggers hers. I also have found that since menopause it has gotten worse and I’m thinking hormones could play a big part in this.

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    • Hi, Judith. I have tried taking Malic Acid a couple of times but it makes me feel nauseous. I agree. Stress, weather, and menopause make fibro worse. I would love to go to a chiropractor but my insurance does not cover it. Take care.

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  • I use a massage oil with lavender to soothe my body it helps sleep too, also meditation

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    • Great ideas. Thanks for sharing Barbara.

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  • I fell down some stairs while transporting a washing machine in March 0f 2016 and damaged my spinal cord. I had surgery of my cervical spine the following June which involved placing titanium rods in my neck. Since then I have pain on the outer surfaces of both arms extending from the top of my shoulders to my elbows. This pain feels like a bad sunburn. I can tolerate only clothing that is light and silky and showers that are tepid, not really warm. My doctor says that the condition is Allodynia. I am on Gabapentin 300mg per day with little relief. Any suggestions?

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    • Hi, Bert. How awful. I am lucky as allodynia is something I don’t experience all the time. It comes and goes. One thing that helps me is CBD Healing Hemp lotion made by The Fay Farm. I wrote a review about it and there is a coupon code you can use at the end of the post. It is a little pricey but a little goes a long way.

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    • Hi Bert,
      I have allodynia down the front of my legs, it slowly crept down from thighs to my shins. It’s awful. I can only wear tight compressive clothing, like leggings, and mostly cotton. I can’t wear jeans or dressy slacks, it’s a nightmare, and no flowing fabrics, the brushing irritates my legs.
      The only thing that takes the edge off of it for me is 600mg of Lyrica daily. I have tried all medications, and ketamine infusions, which works for some. Your gaba dose is a little low for pain relief. My doc told me that gaba has to be around 1800 mg or higher to start helping with pain. Of course you have to tolerate it too. I am about to try a high quality CBD oil, orally, just starting. I hate winter now. I’ve had it 6 years. Try your best to not let the pain get our of hand, try meditation, keeping calm, and good nutrition is important. So sorry you have to deal with this too.

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  • Hi Bert – Sorry to hear about your Allodynia. I also have Allodynia on the same locales but from a different cause. I had shingles one year ago and was left with postherpetic neuralgia (PHN), and subsequently developed Allodynia. I am not able to wear any sleeved shirts as the rubbing of cloths would cause my skin to burn – just awful. None of the meds I tried were effective. The only reliefs I found is to leave the shirt off which hopefully you could do at home. I wear sleeveless muscle shirts when I go out. Also Lidocaine cream has been helpful. I have to use the maximum strength (5%) as it does make a difference. That would require a prescription from the doctor. I also tried Capzasin cream for a short while but gave it up because it burned my skin more than helping it.

    So that’s my experience. I hope you find something that will provide you relief. Thanks to all for sharing.

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  • I have fibromyalgia & my doctor put me on gabapentin. Since I’ve started gabapentin the tingling, burning, itching has gotten worse. I was managing okay up until I started gabapentin. Feeling fustrated cause it makes me feel tired all the time. Warm whether helps me some, compare to the cold whether that causes me to hurt more. Wondering if I should be taken off the gabapentin since it makes me feel tired along with it making symptoms of tingling, ect. worse.
    Sincerely
    Mrs.Justice

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    • Hi Debra. I think that’s the problem with most of the medications we are given for fibromyalgia. They often make things worse. Even if they seem to work in the short-term, eventually they do more harm than good. At least that how it has been for me.

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  • Glad I found your site. I have fibro that is a result of a nasty bout of Epstein Barr. Natural progression is what I was told. The EBV started about 15 years ago and who knows when exactly the fibro started. The intense burning on the side of calves started a year ago. Every year a new symptom. This year it’s the wrist and ankle pain. It’s the surprise disease that keeps giving. I can say the best medicine is finding sites like this and knowing that as bad as it gets, there is always someone that would gladly take what we have over what they may be facing. Keep up the good work. It’s people like you that give us a voice amd a place to find understanding.

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    • Thank you so much for your kind words, Melanie. You made my day!

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  • I just started using the Avacen machine. Have you heard of it? I have a pain advocate that recommended I try it. Google it – it is approved for fibromyalgia pain in Europe. It is FDA approved here, but not for fibro. I have allodynia from a neuropathic problem – but allodynia is allodynia! I hate it. It’s down both legs, clothing is a constant problem. I find cotton works best, and live in leggings. Check out Avacen, maybe it can help some of you.

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    • Thanks for the tip, Debbie. I will google it and check it out.

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  • I have had fibro for a couple of decades now. I only recently discovered that you can get amitiriptyline and other meds put into cream forms to put on the skin. It has been awesome for my knee pain, and I am going to try it tonight for the skin pain on my back. I haven’t had this before – seems to be an offshoot of the flu. I will never miss my flu shot again!

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    • Hi, Wen. I didn’t know that you could get amitriptyline in a lotion. I did not get the skin pain until about 2 or 3 years ago and it only seems to bother me in warm weather. So far anyway. Hope you feel better.

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  • I have been diagnosed with fibro, CFS, insomnia, EBV, neuropathy after very intense blood work, medical history…etc…anyhow as all us fibro fighters know, it flares and gets worse as time goes by. The burning/achy pains I get now in my hands and feet have just recently grown so bad it is very noticeable and even my pain meds and gabapentin are not helping.?? However, a med that I was on but stopped because I started forgetting to take but still prescribed, I began my doses again and noticed it took the hand and feet pain away?…I once again stopped and the pain came back? so I know this med helps my hand and feet pain. The medication is for fibro and called Savella. In order for me to be able to handle Savella I take in morning the lowest dose AFTER I eat so I don’t feel sick. I only took it once a day be twice was horrible for me.☹️ I had lost a lot of weight on it which was awesome, but when I stopped it and started the gabapentin I gained all my weight back fast ?so I am sure the extra weight doesn’t help. I will be making sure I stay on the Savella now. I also noticed the severe insomnia began after stopping the Savella…so crossing my fingers the Savella gets that under control. Anyhow…this took forever to type…having to put cold against hands every now n then to ease the pain…so I hope my story helps someone/everyone who suffer this debilitating condition. I’m going to eat n start my dosage of Savella to feel better. Wishing you all painFREE lives. Many “spoons” n gentle hugs to you all. ??

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    • Thank you for sharing your story. Gentle hugs to you as well.

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    • I took Savella and it did help some but not a lot but the reason I quit taking it is because it can cause hair loss. I started noticing my hair was falling out and so were my eyebrows and eyelashes. It wasn’t worth it to be with no hair lol

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  • I would also like to add one more important thing I have to keep learning the hard way…when I have good days NOT to do too much just because I’m not flaring…if I do, I end up more often back in a flare. I also have kept my distance from anyone (family included) that tends to stress me because I flare soon after. Holidays are the worst for me…because soon after I’m in major flare due to running around, doing too much, and the stress of it and tbh some family members. I love them but it has gotten so bad I now must do what’s best. Once I was feeling great for months so what do I do…I started fostering bottle baby kittens for a rescue, ended up with 13 at one point as they kept coming in! Then I guess I got scratched somehow ended up with a horrible staff infection in my ankle. I went to a dermatologist and it wasn’t ready to lance but she did and it made is worse to where it was spreading up my leg and I ended up in the urgent care where they had to lance it and at that point I do believe the entire place heard me screaming into my spouses chest…appearently our ankles have the most nerves the dr said and add that to someone with fibro n neuropathy…yeah not fun. However I made sure the babies where taken care of…ya should have seen me with my crutches to make their bottles n baths etc n crawling with my leg up to set up for feedings etc lol was a sight for sure and all the babies found forever homes…I even adopted one from the first litter I received…and I ❤️ her to pieces ? ! Anyhow i had to stop because I went into the worst flare…wasn’t days or weeks anymore…wasn’t even months…its been over a year and my CFS just started easing up and here we go again…Easter…now it’s beginning…the flare I just know if I don’t pace myself I will regret it….the problem is I forget… hell I forget everything now a days…even words…ok this pain is bad so gtg but will keep u posted on Savella treatment n anything I find that helps.

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    • I think we all learn the hard way but it so hard not to want to catch up on the days I feel well. Thank you for taking care of those kittens. I could not imagine a life without pets. I have a cat and two dogs. Taking care of them keeps me going.

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  • Does anyone have excruciating pain when coming in contact with anything water based? My son has been diagnosed with Asperger’s and Classical EDS (Ehlers Danlos Syndrome). When he comes into contact with anything with a water base, takes a shower, gets caught in the rain, etc., he said it feels like acid is on his skin. It is so severe he cannot bathe anymore. He is 23 and cannot be around moisture which is very hard to do. If anyone has any information, please, please contact me. Allodynia is the first thing I have heard or read of that matches the symptoms he has.

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    • Hi, Samantha. Although it is very rare it is possible to be allergic to water. The condition is called aquagenic (water) urticaria. The skin will itch or burn after exposed to water. Hives, rash or redness may also appear.

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  • For the author: You may have Erythropoietic Protoporphyria.

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    • Hi, Ejay. I read up on Erythropoietic Protoporphyria. Very interesting. Although, the rash I get looks nothing like pictures of Erythropoietic Protoporphyria and there is no swelling. Also, the pain and rash get better once I am out of the sun. High humidity can also cause my skin pain even without the sun.

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  • Thank you so much. I have fibro and scratched my itches over the years wondering if I was allergic to my own sweat. What a relief it is just another symptom of fibro!

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    • Your welcome, Shelley.

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  • I have severe all over body pain from head to toe sleepless nights I get rashes on both legs periodically I feel like something crawling under my skin now I’m broken out in blisters and little bumps that itch horribly today I go a stinging burning pain on the lower part of my neck went to ich it felt little bumps a in big blister that broke and drained and it’s unbearable to deal with what should I do I have fibromyalgia for 8 years and it’s been hell on me

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    • Hi, Deborah. The most common reason for a blistery rash is direct contact with an irritant. Many things can cause this reaction including soaps, cosmetics, fragrances, foods, plants, and sun exposure. I have dealt with this since I was 16 years old (long before I was diagnosed with fibro). The best thing to do is eliminate your exposure to as many chemicals as possible. Easier said than done, I know. It was a long process of experimenting with different product brands to figure out which ones I could use. Taking Benedryl and a warm Epsom salt or oatmeal bath can help with the itching. Gentle Hugs!

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