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612876 tn?1355514495

Allodynia and hyperalgesia 2013 update

Rather than resurrect my original post on this subject from ... 2008? ... I thought we could start a new thread for the few of us suffering from this form of pain. I've learned a LOT more about it since I first came here seeking help, and I wanted to summarize a bit of that for anyone looking for information on this vexing issue.

First of all, there are many, many causes of secondary allodynia. Allodynia (and often hyperalgesia) can be secondary to migraines (often complex or silent migraines), RSD/CRPD, polyneuropathy (sensory), autonomic neuropathy (which is why it may be a symptom in a small subset of POTS patients and dysautonomia patients), and other pain syndromes like fibro and myofascial pain syndrome. There is also such a thing as primary allodynia.

Treatment depends largely on the underlying cause and can include topical patches and creams, narcotic/opioid medications, neuroleptic medications which specifically target nerve pain, desensitization therapy, and alternative medicine as well as mindfulness and meditation practice.

My personal journey with this pain landed on a path of healing when I printed out my 08 post from here YEARS later and took it to my family doctor, begging how long my pain would go on being a "back burner" issue for my docs. My doctor was very open to hearing my concern and referred me to an excellent neuromuscular specialist. I've continued to see her, and also the pain management Neuro that she referred me to, ever since. Having a dedicated pain management specialist makes a world of difference for me. It's icing on the cake that he's a neurologist so he truly understands two of the three rare diseases I have to contend with.

The take home message, if there is one, is that there's no one-size-fits-all remedy for allodynia, so what is needed is a medical team who can properly identify the root cause and go from there.
11 Responses
Avatar universal
Hy Heiferly. I start feeling the allodynia since 2 weeks. Its a pain in the A**....I feel like I want to stay naker for my thigh the hall day. Acctually you sad a very important think.  : " so what is needed is a medical team who can properly identify the root cause and go from there.""
This mean for every result there is a cause. For me I have a spinal cord tumor (intramedullary) and it is 90 percent causing my alllodynia..+ my huge pain and numbness...I think allodynia is one of the reason which is pushing me now for surgery even it is very risky...
If u have any advice please let me know on this post...
I have tried patches for my allodynia, but even their edges hurt, and I agree that TENS doesn't work either. The only thing that helps is a product called Pain Break. I just rub it in every 4 hours and then put on a tight camisole before other clothes. I then can go outside for a couple of hours. This has been going on for 12 years.
612876 tn?1355514495
I know exactly what you mean about wanting to just stay naked all day! It's so hard for people to understand how hard it is to function when your clothes are killing you!!

Here are things that have helped me: gabapentin (neurontin) has decreased my need for narcotic/opiate pain meds, lidoderm patches have been helpful where there is a specific/localized area that is particularly flared up, likewise with lidocaine 5% gel but its effects are brief, Opana ER, and oxycodone for breakthrough pain. More recently I've tried fentanyl patches for my extended release pain med and I've found that to be superior to the Opana for my allodynia, but that may be because delayed gastric emptying was making the Opana less effective as my gastroparesis progressed.

I've also used my TENS unit, but though it helps with other pain I have, I've not found it particularly helpful for allodynia. Maybe someone else would disagree.
Avatar universal
I have had what appears to be allodynia on and off for about three years on the top of my head. I have had it worse this time and it's moved to the right side of my head. It is like my hair hurts. I have never had terribly painful headaches with this but some headache pain. I also am experiencing some numbing tingling sensations in my right arm. This is something I have had on and off for about 12 years. I have been to two neurologists who found nothing. I also was diagnosed with fibromyalgia about ten years ago. I am wondering if all this could be related? Any input would be appreciated
Avatar universal
This may seem odd, but I feel I have Allodynia in my gum tissue. I know it in my heart because I have a pain in my gum where teeth are gone and only hurts when my tongue touches it. I do not fit any symptoms for trigeminal nueralgia or atypical facial pain, I only feel this upon pressure. I wear a guard in my mouth 24/7 so I can not press on it.
Has anyone ever had or heard of someone having this in gum tissue? I am currently on Nortriptlyine with some releif, but recently started naproxen after reading about allodynia and have had further releif. Please reply if anyone feels this could be in gums. Thanks!
Avatar universal
Been dealing with a come and go, move around case of allodynia most of my life (58yrs).  Finally got a small patch of shingles last year and have some acyclovir from my doc to treat that.  Now I'm wondering if the two are related especially because of an article I read this evening that the cause of allodynia:  "is caused by a change in the dorsal horn of the spinal cord that gives non-noxious sensory information access to the nociceptive system causing innocuous stimuli to be perceived as painful."  So, I'm thinking that my Chkn Pox virus has been active all these years causing me the Allodynia.  Now I'm thinking that the acyclovir might reduce the length of my attacks (5 -10 days atprsent).  Hmmmmmmm??  Any comments?
Yes, I contracted allodynia after I had shingles and in the same area. It has since spread over 12 years to my entire trunk on the left side. The only thing that has worked for me at all is Pain Break, which I also talked about in another post here.
7340060 tn?1390217813
I am on various medications like oxycodone, a muscle relaxer, and gabapentin i dont find that any of these meds respond to the pain in my skin. Being naked is helpful however the pain consists head to toe so sitting or standing doesnt make a difference it just hurts. I find my tens unit most helpful. However due to the fact that it hurts everywhere it just simply isnt big enough i move it around my body which helps but the second it stops i am back in pain. I have found heat helpful as well. Cold makes it feel worse. I get flare ups about every two weeks and i never know how long it will last. I have never been diagnosed with fibro but it runs in the family. Doctors typically say that my pain is related to my back since i had surgery about a year ago. I know longer feel as if the two is related since for the most part my back feels good. The gabapentin works for the restlessness in my legs and prevents them from jumping however like most meds there are side effects I frequently get sinus infections from the med which causes viral infections in 10% of the people who take it.
Avatar universal
I'm a physio, working with people with these types of pain.  Do you live anywhere near a good physio - preferably someone who is expert in neck and head pains?  It sounds as if your pain may well be referred from the cervical spine (this would explain head pain and arm/hand symptoms).  It's really worth looking into this.  I've recently successfully treated a woman who has been crippled by constant head pain - she's back to normal, working and leading a full life.
Avatar universal
My daughter - 16 was diagnosed with POTS two years ago at Children's Hospital in Philly (CHOP).  She tackled that somewhat successfully with water and salt and exercise but now has been diagnosed with AMPS (Amplified Musculoskeletal Pain Syndrome).  And she has allodynia which seems to follow the same pain rating as her AMPS given the day - and which bounces between a 6-9 every day.  the doctors all say, she has to exercise and rejoin school and take her life back while she waits to get into the CHOP program which could take 6 months (just to get her first appointment).  Not even sure what i'm asking for at this point.......she hasn't been in school for 6 weeks!
Avatar universal
reading these postings is the closest I have come to knowing what might be wrong with me...after 14 doctors and no answers.  My questions are-1. is there a test for tactile or mechanical allodynia?  2. what type of doctor is the best to see for a diagnosis?  3. is it possible for this to come on over night? 4. what medications have helped most of all?  I went to bed May 7,2010 with skin that felt normal- I woke up the next morning feeling like I had the worst sunburn over 25% of my body - now 4 years later the burning/stinging pain is over 50% of my body. Not being able to wear clothes, tolerate water, heat, etc. has made my life unbearable.  I have missed out on so much - I think the only thing that would help would be to join a nudist colony, but I am much too inhibited. Any help with the above questions would be so greatly appreciated.
I met a doctor whose father went to Hawaii so he could live without his shirt on the beach. Oddly he then had a stroke and the allodynia stopped!. I have had your kind of allodynia for 12 years.(A third-degree burn with needles going into it is the way I describe it.) I found Pain Beak on line, and it is the only treatment that has worked for me. It's a lotion that you rub into your skin  every 4 hours. All natural and developed by a doctor. Not cheap: $12.95 a tube. I put a very tight silky camisole over it. Mine is over the left side of my torso, front and back. Yours seems even more widespread, which I am sorry to hear.
Avatar universal
I have tried everything from the strongest drugs to patch,infusion and nerves block but nothing seem to help a bit. Counting my blessing and struggling each day hoping for a miracle.
I am crying as I read your post! I cannot get dressed or even go out of my house because mine has been because of migraines and my biggest trigger is the smell of coffee and mint! I pray everyday, count my blessings and struggle to even get 4 hours sleep while feeling like I have been set on fire and are burning alive!! Thank you!!
Avatar universal
I have allodynia of all the listed types in my torso and legs, especially in the thigh and knee area.  In my case it appears to be caused by an MS lesion in my spine at T5, which also causes other symptoms.   It started 7 years ago and is among the symptoms that led to my MS episode.  But anything that scars or pushes on certain very particular parts of your spinal cord can cause it.  The best type of doctor to see for a diagnosis is a Neurologist, but that is a huge field and Neurologists can have very different specialities.  So you may have to see more than one doctor to get a diagnosis.  Getting a diagnosis is not the same as getting pain management.  Even if you find the perfect neurologist I'd still go see a few pain management specialists--specifically ones who have expertise with neuropathic pain, which is a small minority.

As to medications, the ones that have helped me most are:
1. Tricyclic antidepressants (TCAs): for me personally the best ones were amitriptyline and imipramine, but there are a bunch that are worth trying, since everyone is different.  When I was at my worst, it was an added benefit that they made me very drowsy, which helped me sleep through the pain.
2. Gabapentin (neurontin) and lyrica, which are two forms of the same drug. they also cause drowsiness, but less so than amitriptyline.
3.  Low dose Naltrexone taken at bedtime.

None of these make the pain go away or make it possible for me to wear long pants, but after taking them long enough I was able to break out of the pain cycle enough to be able to concentrate on other things most of the time and that of course makes a  huge difference for quality of life.  So in the end they really have been a game changer.  

It is also important to create a list of everything that makes the pain worse and everything that makes it better, even slightly and try to control those factors as much as possible.  This can help you break out of the pain cycle.  The most difficult thing is that stress is a HUGE contributor to the pain, but of course the pain is very stressful.  But do your best to get rid of as many stressors as you can and also try to analyze all the other factors that might help, such as temperature, posture, hydration, body temperature (take tylenol or something if your temp is a little high), try to stay as social as you can (even if it has to be via skype or phone).  Distract yourself from the pain as much as you can and so on.  Pace yourself with physical chores.  Keep doing all of these things AND find the best meds that you can for your own particular case, and even if it doesn't seem like its working very well, you may one day find that you broken out of the worst of your pain and you can have a better quality of life again--even if it sometimes still involves being naked whenever possible.

I'd avoid opioids if at all possible.  (If it's not possible, then it's not. With this crazy pain, you gotta do what you gotta do.)   They are dangerous and for some people they can become a nightmare because they start making the pain worse in some case and then the withdrawal if you try to quit is even worse.

If you can find meds that help, definitely take them.  Being in chronic pain can actually train your brain to continue to be in pain.  So there is a very high value in getting out of pain to whatever extent you can even if it means taking high doses of Lyrica/Neurontin and TCAs, which will probably make you very sleepy.
Sorry, I meant to say that allodynia led to my MS diagnosis not my MS episode.
More info: http://www.instituteforchronicpain.org/understanding-chronic-pain/what-is-chronic-pain/central-sensitization
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