posted
Hi. Since 2001 when my Lyme nightmare began I have constant neck spasms. They show on MRIs and are noted by doctors. I take Klonopin(clonazepam), it is the only medication that really helps.
Does anyone else have any suggestions for unvoluntary neck spasms that are CONSTANT. Take care all and thank you in advance.
Posts: 260 | From Long Island, New York | Registered: Jul 2001
| IP: Logged |
posted
I'm really looking forward to hearing what everyone has to say. I feel like the sides of my neck, the muscles, all of the way down to the tops of my shoulders are in CONSTANT pulling motion. It is so bad that I have almost felt suicidal from it.
The only thing that helps is the benzo family. After a while, I have tolerance. I will admit....I have had to up my dose (I NEVER feel drugged or out of it - I actually feel like my old self again) but I can take 5-10 2mg pills and it finally takes the pain away....of course, I do not do this every day, only the days when I CAN NOT TAKE IT ANYMORE.
Most days I take about 8mg. I know, sounds like a lot, but it's just tolerance. I am not a druggie whatsoever, never act loopy, never looked messed up....that's the crappy thing about benzos - you can build a tolerance, well, at least I do very quickly.
This is my most PAINFUL symptom and it makes my life a living hell. I also feel like I'm being stabbed in the neck and the face, and benzos help that greatly. It's an embarrassing thing to admit, most ppl would think, how can you function on that much? I look and live life almost like I don't have Lyme, which is ironic. I don't get tired, or anything.
It takes away my twitching, rib sensitivities, etc. also.
But, no doctor would ever rx that much so on my really bad days, I will take more, but that means I have to live a lot of pain filled days as well. It sucks that you have to choose when you are going to feel horrible mind blowing pain.
No muscle relaxers have helped, I think I've been through about all of them.
Does anyone here know of any different kinds that would help?
Didn't mean to hijack your post, but I can totally relate to this. I hope you get a lot of answers. And no, it's not anxiety or stress - it is something physical and beyond my control.
-------------------- ~*~Lyme POW~*~
I will escape. Posts: 100 | From n/a | Registered: Oct 2008
| IP: Logged |
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Are you in treatment for lyme? I do not know what treatment you are doing, but after about 8 months of IM bicillin, my constant back spasm went away! And never came back (knock wood, yet)....it was delightful.
But that took almost 2 years of daily relatively high-dose antibiotics to get that wonderful relief.
Posts: 2557 | From home | Registered: Aug 2006
| IP: Logged |
Neck spasms will not show on a MRI. So, the original poster must be confused.
Muscular spasm can be temporarily treated with benzos or muscle relaxants, but long term they lose their effect. The dose needs to be constantly increased and tolerance is common. Ultimately, in months/years you will find yourself on high dose meds (and the resulting side effects) without any change in pain from prior to the medications. That, unfortunately, is reality.
First, rule out nerve impingement (which CAN be seen on a MRI). Rule out cervical disc disease (which can be treated surgically). Beyond that, treatment would typically involve trigger point injections (local anesthetic and steroids), massage, TENS unit, accupuncture, relaxation techniques, and different classes of medications, like neurtontin (or lyrica) as well as some antidepressants like elavil.
Posts: 99 | From Bucks County, PA | Registered: Aug 2008
| IP: Logged |
Shosty
Unregistered
posted
JesseSap, thanks for the very sensible answer.
My MRI does show cervical problems (two indentations of cord) and also 3 compression fractures in thoracic spine. I also had a positive EMG for the left side, showing nerve impingement. I have a constant painful pulling sensation on the left arm/shoulder.neck and my left arm is visibly very much shorter now than the other. I have had very positive Lyme tests, and also an extremely high anti-nucliear antibody of 1:5120.
So, for those of you out there in pain like this, it can be a long and complicated road to tease out what is what, and what helps. I personally feel that, even when there are objective tests that show good cause for some of the pain, it is also true that Lyme and/or autoimmunity can increase inflammation and pain, maybe even past a sort of subclinical level that might have been there otherwise. It is also possible that the Bb bacteria migrates to these areas of inflammation, and make things worse.
Then again, not everything can be blamed on Lyme, so it takes some discipline and time, and good doctors, to figure out whatever can be figured out.
p.s. I just read an article that the company that makes Neurontin has been hiding studies that show it has little effect on nerve pain (although I do know someone who swears by it).
IP: Logged |
posted
I just read the responses to my post and thank you. I know massage and acupuncture help but they are very expensive.
Does anyone's insurance company pay for massage or acupunture?
I know Klonopin is addicting, but I have been on the same does for almost 4 years .5mg two times a day. For me Klonopin is the only drug that helps with the pulling of the neck muscles.
Why is Lyrica any better?? According to the literature it is used to treat seizures, pain etc. and it is addicting. Please respond.
Posts: 260 | From Long Island, New York | Registered: Jul 2001
| IP: Logged |
posted
I've tried Neurontin, Lyrica, Cymbalta, Elavil, all of the classic muscle relaxers, vitamins, hmmmm....what else?
The only thing that helped was the Klonopin, Xanax, Atavan class of medication....much to my dismay.
I still search for answers as I don't like how tolerant I've gotten to those meds.
To the original poster: I went to a neurologist who suggested getting Botox in my neck. He (I think) misdiagnosed my neck issues as being cervical dystonia and he said that Botox helps them. I seriously doubt I got Cervical Dystonia AND a bunch of Lyme symptoms at the exact same time...but regardless of the diagnosis, if it helps, then I'm up for it.
Now I just gotta get my insurance on board...
-------------------- ~*~Lyme POW~*~
I will escape. Posts: 100 | From n/a | Registered: Oct 2008
| IP: Logged |
posted
medical acupuncture has been totally invaluable for me with muscle spasms....yes, the sessions can be painful, but the relief for me was/is fantastic. it is a specific approach, not every acupuncturist can do it well; a weekend course on trigger points will not cut it! find a practitioner here:
-------------------- do your best to educate the rest because 9 out of 10 doctors don't know jack about tick borne illnesses Posts: 437 | From shawangunk mountains, ny | Registered: May 2008
| IP: Logged |
Mycobacteria are extremely invasive and travel anywhere they damned well please. And they do, as they have a proclivity for organs and the spinal column.
Pini, something does not make sense to me:what do you mean that muscle spasms show up on MRI? Did you read the MRI radiologist report? If not, you can get that from the doctor -- it's your medical record. Also, have you been tested for coinfections?
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
| IP: Logged |
posted
My father has Lyme disease which contributed to horrible neck spasms (muscular). Botox seriously helped. His spasms are minor and infrequent now, unless he is under stress.
Posts: 129 | From Virginia | Registered: Feb 2008
| IP: Logged |
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I have back spasms. They feel like really hard twitching in the small of my back. Luckily, it doesn't happen all the time, but off and on.
I don't know how I'd deal with it constantly.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
| IP: Logged |
posted
Hey all this is a great subject b/c it is literally a very painful subject for me!
My neck right side only has been a major issue the past year and a half!! I see a pain specialist and he helps try to cover all the basis as far a muscle relaxers, nurontin-nerve medication, narcotics a long acting every 12 hour and then a break through medication of Roxicodone every 6 hours! Now with all that said I was getting weekly massages and I was also adding in Maraine shots trying to break the pain cycle! So far no luck and we are now doing the marcaine shots once a week instead of every two weeks!
Tha pain is horrible and I spend so much time trying to deal with it that it can take a toll on you as well!!! Don't worry about ever getting addicted if you truly need the meds than take them and don't feel like you ever have to defend yourself!!!
I have never experienced this kind of pain and prey every day it would go away!! I have nerve pain, muscle pain,bone pain, joint pain and severe head pain and eye socket pain!!! I get a bells palsy of the right side of the face and that is where all of the shoulder pain is! Coincidntal hugh!!
Anyway, that is my two cents but do what you have to do to take care of yourself! This diseas is a bad one and you just need to get good Dr's who understand and take care of you! I wish you the best of luck!
Take Care, Onmyway
Posts: 131 | From Georgia | Registered: Oct 2008
| IP: Logged |
i am concerned w/ some of the advice your recieving
taking klonipin at that high a dose will cause problems even if you dont realize tjat it is
my wife has been on klonipin for a long long time
she eventually built up to a perscription of 2mg 3x per day - and some times she would take more during some rage/anxiety issues
she didnt have any idea these drugs where affecting her personality until after she lowered the dose and got her mind back a little lyme casues confusuin and taking klonipin at the huge dose you mentioned id]s most certainly going to add to that
dont get me wrong im not saying you should feel bad or any guilt - many times my wife has done the same thing as you and she also feels the need to try and defend herself but there is no need - she is suffering and sometimes she woulddo anything to relieve her pain
she eventually on her own decided to stop the dose completely- she went through some real hell for over 1 month - she stopped taking them all together - the reult was horrific
i dont recommend you stop at all - this was a mistake for us to stop ut i mudst say the one good hing that came from it was she went back on at 1mg 2x per day - and it was effective
prior to her stopping 1mg would have been a joke and done nothing- so she did lower the dependency
what she did was get a rx for 1mg 3x day and then only take it 2 times - this gave her a back stock to use on her bad days
but the amount you quoted is way way to high and the ups and downs are bad - if you are taking more some days then you must be running out b4 your time to refill - so some days you get none - this is not good - kloipin is meant to be constent and you not having it some times is also very bad
what she has also done is get the doc to give her a script for 20 ativan .5mg per month - she takes them when needed but keepds the klonipin goiung always
anyone tried flexeral - its a muscle relaxer and it helps in 2 ways - she takes 10mg at dinner and then another ten at bed and it helps her sleep much better and it seems to help
do not let anyone put any steriod injections into you neck
early on she did this and it really f@#$%d her up bad - pain was 2 times worse from that day foward
she did the botox but all i did was give her head aches
massage does give her relief but only for a few minutes during the message and i have to push on her shoulder neck so hard i cant beleive she can take it
nerontin, gabatrol and the others she tried in that class did nothing after the first week or two
Posts: 25 | From Florida | Registered: Jul 2008
| IP: Logged |
posted
Neck spasms and headaches/migraines are a daily occurance for me.
Thank God I have a wonderful wife who does nightly deep tissue massages of neck, face and scalp. It does wonders... I also do self massaging of the neck, face, head...hell, fingers, wrists, arms throughout the day to keep things loosened up.
You may want to see to it that your pc height is adjusted properly, and when you catch yourself hunching your shoulders, relax them down, deep breath, etc.
You can also try hot or cold packs and showers and baths as well to loosen things up.
Posts: 514 | From . | Registered: Apr 2008
| IP: Logged |
posted
You should try an infrared light device on it, if you have one or know of someone who has one. Frankly, I think all these problems are due to having bacteria in those tissues, based on personal experiences.
Posts: 975 | From California | Registered: Apr 2007
| IP: Logged |
posted
Thank you everyone for the advice. I do have anger issues, and sometimes I think it is the clonazepam(Klonopin). I have never taken more than 1mg a day. Sometimes I take .75mg per day.
I would like to go off the medicine, I did when I was pregnant with my second pregnancy. It was hell going off of it, I didn't sleep for weeks.
Does anyone else have anger fits, and is it related to Lyme or the mecication. Thanx.
Posts: 260 | From Long Island, New York | Registered: Jul 2001
| IP: Logged |
posted
Thank you everyone for the advice. I do have anger issues, and sometimes I think it is the clonazepam(Klonopin). I have never taken more than 1mg a day. Sometimes I take .75mg per day.
I would like to go off the medicine, I did when I was pregnant with my second pregnancy. It was hell going off of it, I didn't sleep for weeks.
Does anyone else have anger fits, and is it related to Lyme or the mecication. Thanx.
Posts: 260 | From Long Island, New York | Registered: Jul 2001
| IP: Logged |
Julz
Unregistered
posted
I guess we all have the same agonizing pains
Therasage.com has a great far infrared heating pad I use all the time that really helps.
I am very curious about the botox injections for relief. WHere do you have the injections? Isnt it dangerous - possible paralysis?
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
![[confused]](graemlins/confused.gif)
Printer-friendly view of this topic