I have developed an new symptom last night and I am wondering if it could be a side effect of one of my medications or if I should be concerned. For the two days prior, I had been experiencing what I believe is called dynamic tactile allodynia (?) above and below the inside of my right elbow. I have had this off and on for many years with no apparent cause. This disappeared yesterday afternoon, but last night I began to get sharp prickly pain/ sensation in this area. Throughout the night it progressed to my whole right arm and then right leg. Then the left. And now I feel it all over my body including shoulders, neck, ankles, even outside and in my ear. The sensation seems somewhat transient in that I feel a burst of prickly irritation here and there sometimes it feels like small ants are biting or fine bristles are poking into me. It is bothersome and sometimes the pricking is sharp but not debilitating in any way but certainly affected my ability to sleep. I have tried ibuprofen thinking that some swelling might be affecting nerves but it does not seem to help. Does anyone have any idea what this could be. it's quite irritating and distracting. I am not sure what to think about this or which of my many doctors I should talk to. I was just on the phone with PCP yesterday about something a sprained ankle that is has turned into plantar facitis. I really don't want to call with another problem.
BKreader, I don't have an answer for you but wanted to say that I hope you are better soon.
Thanks Shay. I only slept a few hours last night. Need to figure this out.
It could be a neuro complication. Someone helpfully posted this link in another thread: http://www.hindawi.com/journals/ad/2012/645967/ (http://www.hindawi.com/journals/ad/2012/645967/)
That sounds like something which happened to the scalp on the back of my head a few years ago. The skin prickled but felt slightly numb at the same time as if I were wearing a shower cap full of ants. It resolves itself spontaneously so I don't have a cure to offer you but those who do have neuro complications should know both Alpha Lipoic Acid and vitamin B12 have been proven effective in the lab at helping the body regenerate damaged nerves.
I'm not a doctor and I'm not sure that's your issue, just reposting the link in case anything clicks for you. Good luck!
Any recent medicine changes? Or environment changes, like new laundry detergent, new clothes, major change in your diet, weather change from hot to dry, or other possible irritants?
If med changes, definitely check with your doctor. If environment, try to switch back to the "old" way.
If neither, then your call on whether to contact a doctor. I know I've had various symptoms appear for a month or more and then suddenly go away. It really depends on how much it is bothering you.
Hope it goes away soon!
I'm in no way educated on a matter like this, but your text reminds me of what I've read about neuropathy.
Not sure what I have is anything similar to yours: I call them "itching fits". Usually they hit my forearms, sometimes my legs and even more seldomly other body parts. They start with a little itch that spreads and intensifies gradually. Before they would just itch for a while and then stop. Now I've noticed that the itching soon transforms into a weird, very disturbing sensation of burning/stinging. Like having stuck my hand into a bush of nettles or something.
I always try to put lotion on the itching area or wipe it with desinfectant but nothing actually helps. It just takes its time and then goes away. However, today I realized that pressing the itching part against a cool leather sofa gave loads of relief - until the leather got warm and I had to find another cool spot. So maybe a cooling bag or something would be a good help.
I don't think I could tolerate this "itching" for hours in a row. It's nasty enough to have just for a while almost every day...
As for your problem - I don't think docs have a "quota" for complaints. They're supposed to take what is given to them ;) So go ahead and talk to your doc about the problem!
Hi, sorry to hear that you are feeling badly.
I have neuropathy and certainly sounds similar to what I experience, but as all other posters have said, you may want to call your dr just to verify that they do not think it is anything that needs further investigation.
I get all sorts of weird symptoms as another poster stated that comes and goes and at first I would worry about everything, but then I started to take a more laid back approach and chalk allot of it up to sjogrens. I see my PCP fairly regularly and have seen my rheumy quite frequenly since being diagnosed in January, so anything I was really afraid of, I would discuss with them.
I AM NOT SUGGESTING you take your symptoms lightly at all, I think if it feels prickly and funny, you may want to call the dr - they may want to do some EMG/nerve conduction tests or even test you for diabetes.
I guess, when it doubt, have it checked out. I agree that drs do not and should not have a quota for complaints or concerns and should be willing and able to talk with you about any issues you may be having. As far as what dr to discuss this with, I would think the rheumatologist but if you have a better relationship with your PCP, call them.
Sending healing thoughts your way.
Thank you all. I emailed my Rhuemy yesterday and my PCP. I guess I get hesitant to complain because I don't want to be "that" patient or "the crazy lady". I swear everything weird and unexplained seems to happen to me. I know a lot of you can relate to that.
I tried Benadryl just in case it is an allergy situation but that did nothing. I have not been taking anything immediately new. I think it might be some type of Parethesia. My allodynia came back on the opposite arm. PCP called said it might be possible that the TB test (which was positive) I had two weeks ago could have triggered something but maybe not. Maybe the Sjogren's. They said to be sure to let my Rhuemy know. I just had EMG and other nerve testing done about 3 weeks ago and everything was pretty normal. They prescribed gabapentin. Sounds scary. Anyone have experience with this? I would rather fix the problem that just treat symtoms.
I am wondering about low B12 which can cause this. I had almost none in my system several year ago and had to do B12 shots. This has not been checked on a few years. I thought about adding it into my supplements but then wondering if I should get tested first.
Finallyadx- I have wondered about diabetes but no doctor has brought this up as a concern. I am not over weight, eat very little sugar, and it doesn't run in my family at all.
Eija- the sensation is irritating and painful pricking feeling. They seem to fire off in small patches at opposite sides of my body at once like my toe and arm, the calf and shoulder. Sometimes sharper like little ant bites. Prickly pokey feelings constantly here and there all over. I keep wanting to slap at bugs. It does cause me to itch too. It's 100 degrees today my leather couch is not cool but I see how that would help. Getting naked and rolling cold leather sounds good right now. Kidding...kinda...
Graphx- good link
Warmwaters- good thoughts. It has warmed up today but not to usual temps for my area. I know mercury can cause this and I did have some fresh caught blue fin tuna the day it came on but I have never had a problem with that before. Although I do know that blue fin can be pretty high in mercury, I cannot imagine one serving throwing my system haywire that fast. Otherwise, I don't usually eat much fish for the high quality environmentally sensitive fish is out of my budget.
I vote for some sort of neuropathy.
But I'm not medical, of course.
Hugs
Elaine
I don't know either what it could be, allodynia or neuropathy. The skin on my whole body was getting extremely painful so rheumy put me on gabapentin and 10 mg steroids and have been without allodynia now.
It's pretty bad that just being in your skin hurts! I hope you get to feeling better soon!
There'll- do you take the Gabapentin everyday or just when you have neurology symptoms (maybe that is everyday). I am waiting to take my first dose tonight when Il am not driving little ones around. I am supposed to take 300 mg 3x a day. Did you start with that does or gradually increase dosage?
I am always so nervous taking new meds.
Medicine reacts to everyone differently, I usually don't get side effects. I take gabapentin 300 mg three times a day. My neuro just increased the dose because I have migraine auras without migraines. Apparently this med works for migraines as well. I just started taking 600 mg at night and two doses 300mg for a week, then change to 600 am and pm for a week then to 600 three times.
Neuro,warned me that I might reach a dosage that will make me dizzy, then I just reduce one dosage.
I always try new meds on weekends when I don't have to go anywhere just to see how the meds affect me just in case.
I think 300mg three times a day is a pretty low dosage, but just right to get you used to it.
When I got the gabapentin and steroids it was literally relief at first dosage for me.
I hope the med will help youmas well!
I used to have something like this. It would affect my arms most of the time. It did feel prickly and like something was crawling under the skin. My skin would at times appear a little flushed. My immunologist told me that it was some type of chemical in the blood that caused this. He had a name for it and, of course, I don't remember what it was called.
For some reason I have not had it much lately. I used to wonder if it was related to being outside---not necessarily in the direct sunlight. Whatever it was it was irritating. Hope that you can get some answers. Irish
I think it might be a subtype of the Neurological disorder Paresthesia called Formication. Totally internet doctoring on that but it seems to fit although some of the reading on this says it's a tactile hallucination. There is no way I am imagining this. I took the Gabapentin and I slept much better. It seems to have calmed it down so that I didn't have the prickly feeling but the feeling of tiny bites continued just not as intense. I realized once it calmed down some I had this milder feeling a little over a month ago when I was visiting family on the East Coast. I thought it was bugs and kept checking for bed bugs.
Irish- I did notice that my inner arms were pretty flushed yesterday.
You all are so helpful. Thank you for your kind thoughts and wisdom.
My itchies are getting worse. They last longer and feel worse :( Today it started on my left forearm. When it had finally calmed down, the right arm started to itch. The itch was so bad I couldn't help but scratch. I tried applying lotion on it, layer after layer but things just got worse. Finally I put on a thick layer of lotion so I could rub the arm without hurting it more. It was like on fire, the feeling made me want to scream! The arm was angry red and now, several hours later there are tiny red spots on it.
I'm starting to fear these itchies :(
Today I had my appt with my immunologist and asked about the prickly feeling on my arms. I had mentioned this earlier in a post on this thread. My immunologist said that this can be related to mast cells. These are cells that are involved in the immune/allergy system. I need to look this up and research it more. THought maybe some of you might be interested in this also. Irish
Thanks Irish,
I will totally look it up. I was wondering if it was allergy related. I did try taking diphenhydramine just in case. I am waiting to see Neurolgist in 3 weeks. In the mean time, I am taking gabapentin and have just upped my dosage. I have requested my Rhuemy run B12 and D testing as well as anything else that would be relevant.
I have had thorough allergy testing as well as ALCAT testing. I am mostly following a VERY strict ALCAT diet. I cannot imagine what else I could be reacting too. Seems like I am just getting hypersensitive to everything.
I did notice that once to medication calmed things down to just the toned down biting sensation, I had felt this before for a few days when I was visiting family on the East Coast mid July. I thought it was bugs and kept checking the bed. My husband thought I was crazy. Then I thought I brought the bugs home. Then a few weeks ago, I had a couple episodes where it felt like I had splashed very cold ice water on my leg. I really hope this could be some annoying allergy issue rather than permanent neurological stuff.
I still have not fully accepted this disease and what it can do to me. I just can't with three small kids relying on me. I cannot understand why new symptoms keep popping up so fast. I feel like I am on a rapid downward spiral. Sometimes I wonder if it is all of the meds.
Hi!
When I first started having SJS problems I noticed that my skin was crazy dry (not necessarily flakey but tight) and if I didn't cover myself with lotion or cream after a shower I would have a pin prickly sensation all over. Drove me crazy. To this day I put lotion on after every single shower and my friends make fun of me because I put hand cream on every time I wash my hands and sometimes in between. My fianc? and I went to a hotel on vacation and got a room with a hot tub and after some romantic time in the tub I tried to play it cool and not ruin the romance by stopping to put cream on but finally I was like NOOOOOOPE! GOTTA PUT LOTION ON! Because it was starting to get prickly/itchy. Lol! True Story!
I have gone through this all summer. It is exacerbated when I am in sunlight. The rheumy said that Sjogren's can cause this (parathesias, neuropathy), but that he would expect to see vasculitus, major swelling of paratoid glands at the same time. He sent me to a neuro who agreed with him. They did lots of blood test, a MRI to rule out MS and EMG/nerve conduction. The only thing that showed up was an ulnar nerve lesion, which would not cause the sensations, as I have them on both arms, legs & face.
Georgiagirl- thanks for your input. I did have some parotid swelling and facial nerve issues a few weeks ago. I can see that there may be sun connection but really hope not. I had a recent EMG about a month ago that was fine. It's just so wierd. Are you doing anything for the discomfort? The gabapentin is helping some but I am needing larger doses. I am waiting for blood test paperwork and visit neurologist on 27th. I too have it all over. I am actually hoping for an MRI that would include my head so I might get some explanation for the shooting pains I get through my face on occasion.
I have this all over all the time....Its usually neuro-related, or as Im finding, probably due to my flucuating hormone levels from menopause, which I common, plus the SS issues.
Yes, bet its neuropathy....
Gursie