Sooo yesterday I woke and felt like I got hit by a truck or somthing. I had pain on not only my face on the back of my neck, my shoulder, my arm, my chest, my hip and really weird I know but my finger hurt really bad. This is very scary because it was all on the right side of my body. I called my doctors office, I was able to talk to the doctor on call and he increased my doseage of Gabapentin. Today when I woke up I felt good (mostly) again. I am going to see a new doctor next Friday, I don't know who else to talk to about this, I don't understand why things are getting worse for me...
one thing I learned is that TN is a royal bugger, just when you think you understand a "pattern" or nail your triggers it changes. you may want to start keeping a log, this will help you Neurologist. I had to ramp to 9/10 doses of Gabapentin before I did the Glycerol injection which helped, I can now get by on 4-5 doses a day but I did have the Gamma knife in Jan and believe the radiation may be just now kicking in, but who knows. Ill I can do is work on how I react to the "episodes" or attacks...
Some anticonvulsant meds do cause muscle pain or cramps (Tegretol is a known one for this) ... perhaps check it out that it's not a side effect of meds?
Talk to your new doctor about doing blood tests for sodium and potassium levels, Sarah. It sounds a bit to me as if you might be experiencing lower than normal levels of one or both -- which is an effect associated with cramps in some patients.
Regards, Red
Red-
hmm okay, I'm feeling better today, but when I called my doctor they did say that they want me to do some blood tests before my next visit. Thank you. It is helpful to know that maybe that is a piece of the missing puzzle, Its hard for me not to think that the pain is just spreading because the pain on my hip was burning. I just hate that things seem like they are getting worse instead of better. well at least I feel better today.
Porcelina-
I looked the side effects like you suggested, but I was also thinking about how i have been having chest pain (on the right side) for a very long time, so I think what Red was saying with the blood test & maybe a combo of getting used to new meds might play a factor as well for just feeling really tired and achy. thank you for your help!
-Sarah
Sarah,
I know what you’re describing. In addition to the bilateral Type I & II, I have neuropathy in my hips, legs, feet AND a finger - just like you mentioned. I’ve also had chest, shoulder and arm pain occasionally that felt like I was having a heart attack, but wasn’t. I do suggest the next time you have the chest pain that you go to the ER, just to be on the safe side.
Since my neurologist upped my Neurontin dose I’ve had less body pain. Hope it helps to know you’re not the only one with this problem. Keep us posted.
Hugs.
wow, this is very helpful because I am was thinking this was more then just a normal pain because of the burning/ tingeling sensations, I was also thinking that because my face pain is much less intence and a little more controlled I am just now noticing the other things going on with me or maybe its just progressivly getting worse for me I don't know, its still very scary. Thank you so much for sharing that info with me, and it does help A LOT to know that I am not the only one. And I am Glad that the medicine helps control the pain in your body... just curious what finger hurts when you have this type pain?
Dear Sarah - you are not alone with these symptoms !
after my teeth/gums/jaw nightmare began 2 years ago - i started having neck problem and upeer back pains mosly on the side of the jaw pain.
also my left hand started "falling asleep" from time to time (my facial pain is mostly on the left ).
the teeth/facial pain was much worse - i didn't really checked the other arm/neck problems etc.
i've done an EMG test - which showed a mild nerve problem on the arm that is reflected from the neck. but EVERY specialist here told me - the jaw and arm etc pain is not connected.
again - WE , the sufferes , i guess know much more. that is why our evidence is important.
i though at first all the neck problems etc were due to not sleeping well, because of the facial pain, and stress (and it might be - but now - i don't know what causes what). i also read here Gloria's story - and i know i'm not alone with these bodt pains.
i will say - before my dental problems began - i was a perfectly helathy 33 yo guy - with no pains in my body ever. i never knew what is neck or upper back pains.
i also know the finger pain you are talking about...it's really not a mild pain.. like an inflamation on one side of the body - thruogh the fingers.
i've had a flu the last week - and my body pains got worse. there is a coneection i'm sure of all the pains.
even if it's just the body stresses it self for so long.. the muscles are tens.. pressuring nerves.. which causes all this etc.
I definitly think that the dental issues is the reason for all of this. People don’t realize how much it affects. I was feeling really good this morning and the in the afternoon it like hit me all at once and now the whole side of my body hurts again. It started with my face then neck then arm and hand and hip. I am hanging out with my friends and I don’t want to say any thing because I’m just sick of complaining. I’m just so sick of being sick, but even people talking around me hurts because I am just sensitive to the noise. Ugh it’s just so frustrating… Sorry I just needed to vent… Thank you
I have no idea what they used. I have had them done on almost all my top teeth and by 4 different dentists. 3 of them are just pulpiotomies (sp?) I have to have all the teeth on the bottom removed and a 5 implants to make like a full denture implant (not removable). On the top I have full temporaries, I need to have 4 teeth removed & replaced with 4 impants and two root canels need to be finished but this will be over the corse of the next two years. I am only 24 and I have had several dentists tell me to just pull them al out,l but I am going to a University now for treatment and they are going to save some teeth and do what is best for me considering just pulling out teeth will cause bone loss. I know, its a lot. and each time I go to the dentist my problems get worse. I could go on and on about my stupid teeth and its going to be a really long road ahead until this is finally over. What makes you say that your problems are 100% dental related?
Hi Sarah, thought I would let you know that I am on day 5 of gabapentin and today I can't stand for more than 20 sec without bad cramping all down the backs of my legs :( My arms are achy too, can only do my knitting in short spurts.
I know for a fact my electrolytes are fine, they were checked when I was in hospital earlier this week. In fact you have to sweat/pee a LOT to get low sodium which causes muscle cramps and as it is if you do get dehydrated most people swing the other way and get high sodium (have had dehydrated patients who needed to drink salt water as you can't lower the sodium quickly by giving plain water as it's very dangerous). It is very rare for someone to have sodium so low to cause cramps. So I would bet you $100 it's the gabapentin.
The bad thing for me is I got cramps on Tegretol which lead to very painful neuralgia in my arms which is what I was hospitalised with. I can't live with cramps like this, I hope my body adjusts or I'll have to tick both Tegretol and Gabapentin off the possible medications list (and both of them fixed/are fixing my face!), and we don't have Lyrica available here I think :(
Ugh thats awful, I can't deal with pain like this forever either. These pains are burning and incredibly painful and more like quick stabbing, i dont know how else to explain it. The burning is what makes me want to think that is is more like neuralgia. I am feeling like I am in so much pain I want to go to the ER a lot of times but I just dont because I feellike they won't help me - I only think that because I have gone before with so much pain thinking it was tooth related and saying "I have teeth pain" they would just give me antibiotics and tylonal3 and send me away saying "go see a dentist". what do they say to you when you go in there?
Sounds like you could be having the same reaction that I had to tegretol but to gabapentin instead. My hands felt like they were on fire, if I touched anything it felt like it was cutting my fingertips and I had shooting stabbing pains down my arms. It was that painful that I took myself off to the ER, I couldn't even rest my arms down on anything. They were really good, they stopped the tegretol straight away and also made sure it wasn't some other nervous system problem that happened to crop up while on tegretol. They said if it doesn't go away or stops suddenly it's some other problem but if it fades off while you aren't on tegretol then that's what's caused it (fading off as the drug slowly leaves my system). It faded off so that's what it was. It was that bad though that I was on oxycodone and codeine for that pain (and I don't even get prescribed both for the TN!). If it is very painful go to the ER and tell them that you are on gabapentin. They will do electrolyte tests as a run of the mill thing on everyone anyway.
Cleo-
This is very interesting info to because I have been told in the past that a dentist went "too deep" with one of my root canals... I have no doubt that I have the right to know what they used, I guess I have just never thought of asking until now. below is an image taken in November but I have had alot of work done since then (only to the top) I dont know if you are interested in seeing this or not, or if you know how too look at it, but all of the dark areas at the roots of my teeth are infection and the red area is pointing to the root canal that is "too deep" (also on the right side of my face, where I have the Pain) thinking back this is definitly a time I can remeber having burning pain. this has been there for over two years. Thank you so much for the info. this is very helpful and somthing I will be bringing up to my old & new dentist...
OMG look at that x-ray! I am gobsmacked (no pun intended) that a dentist would do that!
mine or the other ones?
yeah I guess I just trusted what they said. I suggesed nerve related pain waayy before I was diagnosed with it and the dentist said: "I don't believe in all that Neuralga stuff thats for some wholeistic dentists or whatever if we remove the teeth you will be out of pain" - I didnt believe him and then found the Univesity who is working with me and is very understanding of my situation.
I think a lot of dentists are cowboys who just want to pull teeth etc to make money to pay for their dentistry school bill! It's like taking your car to a mechanic who says you need this and this and this when you might not even need it, they just want the money!
I don't know that dentists "just want the money", but we still can't escape human nature even in the helping professions. Financial self-interest tends to operate subconsciously, resulting in practices which resemble the old but true observation that when the only thing you have is a hammer, then everything starts looking like a nail. In this context, I'm personally convinced that TMJ disorder is vastly over-diagnosed, for precisely this reason. I am amazed by the number of facial neuropathy patients I've talked with over the years who were actively DENIED evaluation for neuropathy because somebody had hung a label of TMJ on them. If it were up to me, doing a root canal without conclusive evidence of abscess, would be strongly discouraged in dental schools and by practice boards.
Regards , Red
Red,
I completely agree with the way you worded that. I was just telling my friend today that my dentist was a nice person and I do believe that he was trying to help me and get me out of pain as fast as possible, but by doing that and like you say "you have a hammer, then everything starts looking like a nail" he took it upon himself to try and fix the situation when he should have passed me off to a specialist a long time ago. But in trying to help me he, for lack of better words, screwed up my quality of life. Well I guess the road to hell is paved with good intentions... as far as the TMJ I have always had really bad clicking and cracking and pain but I adressed the problem and my concern with the dentist years ago but nothing was ever treated or tried to be taken care of because he was always trying to just get my teeth free from infection.
I cant even begin to count how many times I woke up to the sound of a tooth breaking because I grind & clinch them so bad when I sleep. Luckaly, the dentist I am working with now is very serious about correcting my bite and working through my jaw issues.
Richard A. "Red" Lawhern said:
I don't know that dentists "just want the money", but we still can't escape human nature even in the helping professions. Financial self-interest tends to operate subconsciously, resulting in practices which resemble the old but true observation that when the only thing you have is a hammer, then everything starts looking like a nail. In this context, I'm personally convinced that TMJ disorder is vastly over-diagnosed, for precisely this reason. I am amazed by the number of facial neuropathy patients I've talked with over the years who were actively DENIED evaluation for neuropathy because somebody had hung a label of TMJ on them. If it were up to me, doing a root canal without conclusive evidence of abscess, would be strongly discouraged in dental schools and by practice boards.
Regards , Red