612876 tn?1355514495

Tactile allodynia and hyperalgesia

I have a disease called postural orthostatic tachycardia syndrome (POTS), a type of dysfunction of the autonomic nervous system, which can go hand-in-hand with fibromyalgia symptoms; some docs diagnose fibro on top of it, some consider the pain part of the disease.  Either way, the tactile allodynia (a kind of skin pain where things that shouldn't be painful are perceived as painful) has been getting progressively worse over the past couple of years to the point of being intolerable sometimes.  The slightest touch from my S.O. will have me screaming out in pain.  Or just the feel of my shirt against the skin on my back will be unbearable, even if it really is soft material.  Sometimes the way the hairs on my arm stand up when I chill actually *hurts.*  Does anyone else have this?  The specialist who treats my POTS says he doesn't want to send me to another specialist for the pain just yet because he's already got me going with a couple other specialists and wants to just focus on a few things at a time.  Grrreat.  My GP says he researched the type of pain I'm having (tactile allodynia and hyperalgesia) and he doesn't think there is anything they can do to help me.  Apparently there is a drug approved to treat it, but I can't take it because of my other medications.  Does anything relieve this horrible skin sensitivity?  I want to be able to be hugged or touched without recoiling in pain.  And it would be nice to be able to be able to tolerate normal ranges of hot and cold with my skin again--right now I'm just so oversensitive to everything and it all gets perceived as PAIN.

Does anyone know what this is about or what I can do?
19 Responses
547368 tn?1440541785
Hello Heiferly,

I am so sorry that you are having such horrid pain. We all have pain here but the thoughts of the type of skin pain you describe must be unbearable. I am so sorry that you have to suffer this.

I haven't any suggestions. Hopefully other members can offer suggestions or some insight that I simply do not have at this time. I can do some research and see what I can come up with. If I find anything I will return and post it for you.

I do think your physicians are correct in focusing on one or two things at a time. It will be less confusing for them as well as you. Best of luck to you. Tuck

547368 tn?1440541785
Hell Again,

I've been doing some research on tactile allodynia. I also multiple references to your condition in conjuncture with Fibro. You may already know the meds that can ease the pain but if not I took the liberty to note them. Numerous compounds alleviate the pain from allodynia. Some are specific for certain types of allodynia while others are general. They include:

Dynamic mechanical allodynia - compounds targeting different ion channels; opioids
Lidocaine (IV/topical)
Morphine (IV)
Alfentanil (IV)
Ketamine (IV)
Methylprednisone (intrathecal)
Glycine antagonist
Static mechanical allodynia - Na-channel blockers, opioids
Lidocaine (IV)
Alfentanyl (IV)
Adenosine (IV)
Ketamine (IV)
Glycine antagonist
Cold allodynia
Lidocaine (IV)
The list of compounds that can be used to treat allodynia is even longer than this. For example, many non-steroidal anti-inflammatory drugs, such as naproxen, can inhibit COX-1 and/or COX-2, thus preventing the sensitization of the central nervous system. Another effect of naproxen is the reduction of the responsiveness of mechano- and thermoreceptors to stimuli.

I hope your PCP (GP) is prescribing one of the medications that may help with the treatment of your pain. Often it takes trial and error and of course time to determine which medication or combination of medications will work the best for you.

Other members should post in the next 24 hours or so but it is Sunday and our weekends are sometimes slower than week days. I am hopeful they may have more to offer you. Again best of luck to you, Tuck
535089 tn?1400673519
Hello and welcome to MH.

I too have what your GP calls POTS Syndrome. Although my Doctor does not recodnize my pain as being POTS. I also suffer with Hep C and the Doc's contribute my horrid skin pain as coming from the Hep. I do not agree with them as I have talked with other Hep carriers and find my pain to be an isolated case. This is interesting to me because I have never heard of my pain described as you have. Most of the aches I get are diagnosed as coming from the Hep but I know different. I go through periods of complete pain in both arms and legs. Sometimes it will effect the scalp and chest. My hair too will hurt when it stands on end and to wear clothes is sometimes impossible.
I have found opiates to be a god send for me. They allow me to function. It would be next to impossible to go outside or take a shower without them.
Tuck has mentioned some great choices for medication to ease the discomfort and I will add that Neurontin (Gabapentin) works fairly well in calming the nerves.
I would definitly seek a Physician that will prescribe an opiate for you.
As far as I know, this is a lifelong condition...At least from my Doc.
If you ever need to chat about what's going on in your life, Don't be afraid to contact me. I would love to talk with you.,
Take care,
547368 tn?1440541785
Hi Again Guys,

My research indicates that primary tactile allodynia will resolve in time. However there is more than one of these conditions:

There are different kinds or types of allodynia:

Mechanical allodynia (also known as tactile allodynia)
Static mechanical allodynia – pain in response to light touch/pressure
Dynamic mechanical allodynia – pain in response to brushing[1]
Thermal (hot or cold) allodynia – pain from normally mild skin temperatures in the affected area

It can come and go but should not be a life long constant condition. I know very little other than what I read.

And Mollyrae is correct that Neurontin is a great treatment for most nerve related pain. In my research I could not find that medication as effect for this condition. In layman's terms my best guess is that this is not true nerve pain but rather the manner in which the brain is perceiving the sensation.

I'll keep reading. I am sorry you two are experiencing this type of pain. Take Care, Tuck
Avatar universal
I too seem to have developed this condition.  It started July 2007 very suddenly and covered my whole body including the soles of my feet.  Since then it comes and goes but seems to coincide with my period.  The pain is usually around my thighs and feet, but moves regularly.  I have been to see a Neurologist and he has put me on Lamotrigine which dulls the pain, but does not remove it.  At least now I have a name for this condition, no one else has been able to help.  Any idea on causes?
612876 tn?1355514495
I am glad to hear the Lamotrigine is at least taking the edge off the pain, but sorry to hear you still aren't getting complete relief.  I don't know what causes it.  My doctors still keep putting it on the back burner until they deal with my other medical issues, which they think are more pressing.  If/when I find out more, I'll post here.
547368 tn?1440541785
Hi Camoli,

Welcome to MedHelp's Pain Management Forum. You have posted on an old thread. You may want to start a new one. I am sorry you are in pain but glad that they have found the reason for your pain. It is worse than frustrating to have undiagnosed pain.

I know very little about your condition as I indicated to Heiferly. I am glad that something is helping. It is on the list that I found of possible medication to treat tactile allodynia. And as I said above it can go hand-in-hand with or be similar to Fibro.  

Others may have suggestion for you other than those offered to Heiferly. Good luck and please let us know how you are doing. Our members are good listeners and very supportive. I am glad you found us. Peace, Tuck
Avatar universal
I've suffered with both tactile and thermal Allodynia for fifteen years.  The pain is horrendous, and some days I can not wear clothes, take a shower, of even put a sheet on my legs.  It is 100% disabling.  It can last a lifetime, and does not resolve in some people.

Allodynia can be associated with migraines, vertigo, vomiting, extreme fatigue, and depression.  It can also be related to auto-immune disease, especially if the ANA is negative.  Accordingly, you may have stomach issues, cold hands, and/or skin problems like psoriasis.

There is a medication called Savella that is proven effective for both tactile and thermal Allodynia.  It has some side effects, but nothing major and they do not last.  The drug is very well tolerated comparatively.
Savella is Milnacapran, a type of serotonin and norepinephrine reuptake inhibitor.  It is not used for treating depression, but rather neurological disorders.  Basically, the brain is sending out pain signals to stimuli that would not otherwise cause pain.  Fabric on the skin, a change of temperature for example.  The stimuli makes the brain turn on, kind of like a light switch.  Savella turns the neurological switch off permanently, so you don't have to be on it your whole life.  It generally works in two to three weeks.  

Try it and see it it works for you.  You have nothing to loose but the cool burning pain of Allodynia.
1219752 tn?1266729435
Hi...my daughter has the same diagnosis.  I don't know if you are still following this post, but I took her to the Mayo Clinic MN.  They gave her a migraine med called topimax.  It calms the nerves and eases the alloydynia. Hope this helps.
Avatar universal
My 15 year old daughter has similar scenarios.  She used to be very active in sports, but finds that increased activity  causes severe back pain, even when nothing is touching her.  She is currently on Neurotin with moderate pain control, until she increases her activity (ie swimming, biking, etc).  Anyone else have this?
Avatar universal
I am happy to have found this site I have the allodynis pain from fibromyliga and I just learn what it was called I have all three I take savella and it helps a lot and topmax I noticed if I slow down on it than I get the pain back .I have no side affects from the savella. So thanks for the great information.I hope I can help someone.
Avatar universal
I am happy to have found this site I have the allodynis pain from fibromyliga and I just learn what it was called I have all three I take savella and it helps a lot and topmax I noticed if I slow down on it than I get the pain back .I have no side affects from the savella. So thanks for the great information.I hope I can help someone.
612876 tn?1355514495
This is a really old "dead" thread that the pain community would probably rather see go peacefully into the good night ...

Perhaps we should begin a new post on allodynia and hyperalgesia?

Let's move the conversation:
9573726 tn?1404617022
I have fibromyalgia, and allodynia, it is awful, i am so painful in any clothing. My skin , scalp now beginning in my feet, , More or less all over, and any little bump , i am a whimp. Not only dealing with this , its all my other symptoms with fibro.. I am on neurontin, but i dont think it is helping. I WOULD LOVE to look pretty one day. In nice clothes. Cant wear bras with good support. Almost all clothing drives us nuts111 People dont know about this much, so its another thing that they probably think we are nuts about. It effects out life, majorly. It ***** when it hurts just to get dressed and being dressed, prayers to u all
15697059 tn?1442339173
I have had fibromyalgia for almost 30 years now. I can count the days I have been pain free since I was 6 months old--it's that few.  I began to get allodynia approximately 5 years ago.  It attacks my shoulders on one side, clears up after several months and attacks the other shoulder.  I've noticed that each time it occurs, a tumor (fatty) appears. Sometimes they go away.  Unfortunately, the one on the right scapula is there until I remove it.  I've had this pain in the left arm/shoulder now for two years straight only to be diagnosed with 'prostate cancer' with metastasis to my lymph nodes. I'm currently taking hormone therapy for the cancer which seems to have resolved a lot of the leg and back pain but not the allodynia.  I plan on ending the ADT Hormone Therapy TOMMOROW because the therapy can lead to a HEART ATTACK. I took a lot of ibuprofen (NSAIDS) which is bad for your heart and can no longer use it after getting a blood clot and pulmonary embolism (blood clot in the lungs) after being diagnosed with the cause: cancer in April 2015.  I'm 61 now and after doing a lot of research, I can tell you that most medicines only treat the symptoms and is never a cure.  Most of these problems, cancer included are the results of poor diet (too much acidic food products and lack of nutrients and subsequently inflammation (the body's response to heal).  Example: most of us have Vitamin D-3 deficiency which is found in almost every severe ailment listed...fibromyalgia; Alzheimer's; cancer; etc.  In April I was down to 160 pounds---lost 35 lbs in 45 days in 2011 and could never regain it.  Lost my appetite in 2011 only to regain it in 2014 but still could not keep any weight I gained.  4 months after being diagnosed with cancer, I weigh 192 lbs--3 lbs less than my optimal weight of 195.  I changed my diet to green food: vegetables and fruit; organic foods; butter not margarine; olive oil, coconut oil, sunflower oil....natural-organic foods...stop eating french fries (white potatoes) because it cancerous.  The point I'm making:  I would never have made these changes without cancer.  The other point:  all these ailments are diet related.  You are what you eat.  Try this link.  I post my research on line for sharing.  I'm not your average 61 year old.  Before the cancer, I was still able to practice basketball "non-stop" 3060 shots a day -- 1020 per hour = 17 shots per minute and make 90% without any rebounders!   I was as fast as I have ever been ...run a forty yard dash under 5 seconds..... I'm already back in the gym but can't do over 1 hour right now.  Change your diet and believe me, lots of these problems will resolve.  Google for recipes (ORGANIC/VEGAN/etc.) you will be surprised how good that shyte can be.  Believe me, 2 years ago I would have called you crazy when someone told me to stop eating meat.  Meat = cancer.  I will still eat chicken and ground beef primarily but not like before.  The temperature (frying) is one major cause along with the chemicals they add to EVERYTHING.  Check here to change your life:   https://www.linkedin.com/pulse/jefferson-chronicle-gary-jefferson-6029320874757=prof-post
Check here to see me in action: http://defend-rebound-finish.ning.com/
Avatar universal
I want to let you know that we're glad you've found our Pain Management Forum, but you need to know that this post is almost 7 yrs old.  The original poster and the majority of the others are no longer active on this Forum.

I so sorry for everything you've experienced but hope you will.stay active on MH (MedHelp) as you sound like you have a lot to share and help others with.  The best thing you can do when answering a post is to check the date on it.  We keep all.of the posts in the archives so whoever needs the information can still get useful advice from the older posts.

Hope to see you on MH and always feel free to share or ask new questions.

Again, thank you for caring and helping and hope to see you around.  ......... Sherry  :)
15697059 tn?1442339173
Thanks.  I realized that but also noticed that some of the comments were recent so I posted anyway for those late comers like myself. :)

p.s. I clicked on the link i provided but I get an error message. So let's try it again.

15697059 tn?1442339173
Link correction for my online research on Linkedin.com:
The Jefferson Chronicle #4
7721494 tn?1431627964
There are no recent comments here that are relevant. And you've posted the link three times.

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