I mentioned in one of my recent posts about my fibromyalgia flare that seems to have been hanging around since my most recent discharge from the hospital. A lot of the abdominal pain, and even pelvic pain, has largely subsided recently but the constant joint pressure and hypersensitivity have made it difficult to enjoy the new-found freedom from some of my other issues.
I think explaining joint pain to others is pretty routine. Most people are at least familiar with arthritis so drawing a pain parallel between the two seems to end with an understanding nod of acknowledgment from the other party. To say that your skin hurts? That’s a different story.
The medical term for this sensitivity to touch is tactile allodynia and in my personal experience, it has become one of my most frustrating symptoms of fibromyalgia. Early in my diagnosis, it only surfaced sparingly yet as time as passed on, it has become a more recent visitor. It has been hanging out since my discharge which would make this my longest flare with this symptom specifically.
I think one of the most frustrating things about it is that I have found little that helps the pain and irritation go away. There are times where the breeze of the fan against my skin feels like a thousand needles. Sometimes the pressure of sitting or laying down feels like my skin is covered in bruises. Other times it seems that my skin is crawling with ants.
The pain and frustration have reduced me to a heap of tears on more than one occasion in the last three weeks. Heat and keeping my skin covered have been the only two things that have seemed to help but given the heat and humidity that accompany summer in the south its not very fun. I have often wondered if could bath in Lidocaine gel in order to ease the symptoms.
If you have fibromyalgia, do you deal with tactile allodynia? If so, what are ways you find relief?
Have you ever tried a Lidocaine injection? It’s done in a drop format over a couple hours and basically delivers lidocaine all over your body from the inside. Quite helpful.
Hadn’t heard of that before! Will def be bringing it up at my next appointment!
Jamee
I feel your pain. I’ve had SLE for 20 yrs & finally got some relief. I went to a pain mgt Dr who prescribed Methadone 5 mg 3 x day. He said it’s safer than taking anti-inflammatories. I also have Lidocaine patches.
for joint flare ups. Lyrica sometimes work for fibromyalgia or a mild anti depressant. Heat also helps me. I don’t do well in humidity or heat. This So Ca summer is making my joints hurt. Hope this helps..
I didn’t tolerate Lyrica well at all. It made me very twitchy (my poor husband got beat up every night in my sleep! LOL). I’m going to check with my pain specialist about some other treatment options for flare ups like these!
I use lidocaine patches to help when the allodynia gets bad. If I cut up a patch & place it on my skin in random spots (under my clothes) it seems to “break up the surface” of the pain and does help some. They are prescription only. I also use Icey Hot. The roll-on version is always in my purse!
I have a lidocaine gel my gyn gave me for vulvodynia but didn’t know there were patches! I will definitely as my pain specialist about these at my next visit!
I am with you on this one, Jamee, but not to the extent you’ve been feeling. My hubby has heard me say too often that my hair hurts, and that’s usually when I’m in migraine mode. As for the skin issues, last night the feeling of ants crawling all over my back about drove me nuts! I don’t have any solutions for these in my life because one of my FMS sensitivity symptoms includes meds, mostly Rx ones. I’ll be praying for you!
Blessings,
~Anna
I have had the hair pain too with migraines! Its crazy the things our bodies can come up with when pain is in overdrive!
I too have difficulties with allodynia. Mine is quite severe and I have it over my entire right side. I find tight breathable, stretch clothing (4 way stretch not just 2 way) very helpful. Much of my clothing comes from outdoor shops. Heavy cotton quilts and blankets instead of down quilts helped with allodynia in the legs at night.
The two classes of medication that seem to be most helpful are the tricyclic antidepressants and various seizure medications such as Lyrica. Lyrica has helped me but has caused significant memory problems which is not at all unusual for that medicine. recently, my doc added a low dose of a tricyclic (nortriptyline) which has also helped. Medical marijuana has also helped me and others with allodynia.
best of luck managing it..
I have never been diagnozed with Fibro,I just figured it was normal even though people look at me like I’m crazy when I say the skin on my head hurts pr the skin on my back,or shoulder or whereever it’s hurting that day. I have never even mentioned it to my dr.I do have Neuphathy is it connected?
Yep, can be connected to neuropathy. I’m a type 1 diabetic and have had severe allodynia on my chest for 8 years. Have to be bare chested all the time I’m in the house. This condition has genuinely brought me close to suicide as it has also caused me terrible back ache due to trying to ‘cover’ my chest pain while in clothing. Terrible condition, we need a real nerve pain specific drug. Not just anti depressant/seizure meds.