Does anyone else suffer from Fibromyalgia or MS as well as their TN?
I've had an MRI and blood work done this past week. I get my results next Thursday and I'm very nervous to find out if there's anything else going on along with the TN. With the extreme neck, back, and body pain.. I really think there is something working hand-in-hand with my TN and it's making me very miserable. I don't even want to get out of bed and I'm slowly starting to come to the realization that the Tegretol isn't working for me and I've already tried Neurontin.
I was just wondering if anyone out there has anything else other than TN and if so, what works best for you?
Hi Taylor...I suffer from polymyositis also. Both the poly and the TN started about the same time but I was also involved in a car wreck during the time they both started too. So my neurologist said he wouldn't even begin to try and determine if anything was related. Polymyositis is an auto-immune disease that attacks the proximal muscles of my body. My thighs, upper arms and chest muscles. I also suffer from frequent headaches. The poly runs in cycles and fortunately some of the same meds that treat the TN help with the poly. The poly pain is a deep muscle almost bone like pain. It just aches so bad and my muscles get so weak I can hardly walk some days. I also recently found out that I have several pinched nerves in my back and have undergone some treatment for them too. My neurologist really thought that I had MS 5 years ago but the tests came back negative, which was a blessing.
I am currently on both Trileptal (oxcarbmazapine 1500 mg a day) and Neurontin (gabapentin 2700 mg a day) and maxed out on both of those. I haven't had a TN attack for 11 months but am suffering one right now. So I count myself very lucky that my combination works. I take several medications for the poly that also may be helping including hydrocodone (Vicodin) daily and 2 muscle relaxers zanaflex (tizanidine) and Norflex (orphenadrine). I am also on an NSAID (etodoloac).
Personalizing a medication regimen can be so frustrating. I am so very fortunate to have an amazing neurologist who works hand in hand with me to control both conditions.
Hang in there and let me know what you find out on Thursday!!
A part of me is glad someone replied and another part of me hates that you have to go through that! I'm glad you have a neurologist that works well with you. Mine seems to very nice and on the ball with things. He was quick to diagnose me with TN after misdiagnoses of TMJ,Wry Neck, and just muscle pain. I'm nervous to find out what is going on with the rest of my body. I'm on the Tegretol twice a day now, about to move up to three a day and I woke up this morning and i'm having an attack on both sides of my face for the first time. I'm not sure if that's normal or what.
I will definitely keep you updated!
Thanks again!
gtkprs31268 said:
Hi Taylor...I suffer from polymyositis also. Both the poly and the TN started about the same time but I was also involved in a car wreck during the time they both started too. So my neurologist said he wouldn't even begin to try and determine if anything was related. Polymyositis is an auto-immune disease that attacks the proximal muscles of my body. My thighs, upper arms and chest muscles. I also suffer from frequent headaches. The poly runs in cycles and fortunately some of the same meds that treat the TN help with the poly. The poly pain is a deep muscle almost bone like pain. It just aches so bad and my muscles get so weak I can hardly walk some days. I also recently found out that I have several pinched nerves in my back and have undergone some treatment for them too. My neurologist really thought that I had MS 5 years ago but the tests came back negative, which was a blessing.
I am currently on both Trileptal (oxcarbmazapine 1500 mg a day) and Neurontin (gabapentin 2700 mg a day) and maxed out on both of those. I haven't had a TN attack for 11 months but am suffering one right now. So I count myself very lucky that my combination works. I take several medications for the poly that also may be helping including hydrocodone (Vicodin) daily and 2 muscle relaxers zanaflex (tizanidine) and Norflex (orphenadrine). I am also on an NSAID (etodoloac).
Personalizing a medication regimen can be so frustrating. I am so very fortunate to have an amazing neurologist who works hand in hand with me to control both conditions.
Hang in there and let me know what you find out on Thursday!!
I have been dx with fibro and TN. It certainly has it's challenges. Stress has much more effect that I could have imagined. Learning how to "put off" the fear and worry made the greatest impact in managing both.(I know, it sounds crazy but it can be done. It just means that I no longer spend any time or energy on the things that I can't do anything with or about. I move on to the things that I can, sometimes that might be the laundry. :-)) I have tried a lot of meds and currently taking Trileptal, baclofen, Effexor every day and Lortab as needed for Breakthrough pain. They are both managed fairly well, not pain-free, but enough that I feel I am getting my life back.
WE all really know when something else is going on in our bodies. I encourage you to continue in your research and be persistent with your Doctors. Ask a lot of questions, don't be surprised if you end up making the dx and finding the doctors that confirm it with success in treating it. Most of us know far more about TN that any of the Doctors we encounter do. The certainty is that we know our bodies and what we feel. Same goes with Fibro and maybe even all the other rare conditions. It is so important for us to help them help us. They are only human too, and they can't know it all. The battery of tests also only confirm so much.
I am so sorry to hear that you are experiencing such pain and anxiety. I was diagnosed with Fibro about four years ago and began my journey this past April with TN. I had an MRI in May to rule out MS. Thankfully it was negative for MS and showed not compression of the Trigeminal Nerve. I wish you all the best on this journey.
Hi. I’ve got tn and fibro, it sucks to be honest. The TN was diagnosed first over a year ago. It was this last June the fibro was decided, though I’m still wondering if it is lupus and not fibro. It took me months to convince my GP that simething else was going on with body before i got the diaginoses of fibro. I also keep mentioning this with my neurologist. It was not until 6 months into my treatment the neuro run a blood test panel and something came back out of normal. Luckily it was towards what I was thinking of autoimmune. For some unknow reason this blood test showed aintbodies in high levels. Thankfully the neurologist told my GP that I was right that something else was going on with me. So I got to see another specialist and get diagnosed with fibro. Point of my rambling is if you think there is something else going on be persisting about it. I bugged each of my doctors I was seeing about it till I turned blue. Only you know what feels normal and what doesn’t to your body, so keep talking to your doctors about it.
Out of the two, the tn is the monster kicking my ass. Fibro is more of monkey on my back, its more of annoyance. Though there have been a couple of times I’ve been admitted to the hospital for a few days and nights where it was most likely due to fibro, but in the long run pain that is ass kicking 24/7 from tn is nothing compared to a few days stay in the hospital due to fibro every few years. There has been a handful of times were the tn and the fibro feed of each other and that pretty much stinks.
Now that I have the info on the fibro along with the tn. My pain managment doctor looks at medications that should help both conditions. One thing that has taken a long time to realize us no medication is ever going to take the pain away fully. It took a long time for that to sink into my head. What I do now is look at the pain scale, and ask is this medication taking the pain down a few notchs or just a notch on my pain level. My goal is to get my pain level down to a five or lower.
Also one other thing to look out for is depression along with pain. I’ve notice my pain levels will jump way high when I sinking into the black hole that just wants to suck me up into. Chronic pain and depression go hand and hand. So you may want to think on that too.
Lastly all if us are different and what works on one of us does not work on the other.