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Julie  Stachowiak, Ph.D.

Lower Back Pain and Multiple Sclerosis

By April 26, 2011

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The sensation that I had a couple of days ago wasn't "normal" back pain - it felt distinctly like a symptom of multiple sclerosis, but I haven't been able to find any info about such a symptom. The pain was in my lower back, at the base of my spine. Don't get me wrong - it did hurt, but more in a buzzy, "electrical" way than a dull, throbbing way. I knew that taking an Advil or Tylenol wouldn't relieve it, for instance. I have suffered from sciatica in the past, and it wasn't like that, either.

The tingly pain did radiate down my legs like sciatica did, ending at my feet, which also felt like they were being bitten by ants. This made walking a challenge, but I as long as I concentrated on where I placed my feet, I could overcome the interference with proprioception. This painful burning also affected my pelvic area, making me feel like I needed to urinate constantly, as if bladder dysfunction had woken up with a vengeance.

Although I spent an hour or so plagued by these sensations, it was late at night when this came upon me. I decided not to allow myself to go down the "this just has to be a relapse" path until I had the symptom for 24 hours. Sure enough, by morning, the back pain and burning was gone.

The medical literature doesn't really address the issue of back pain in MS per se. There is some mention of back pain being more prevalent in people with limited mobility, which makes sense - time in a wheelchair could cause pain. An uneven gait that is caused by spasticity or weakness in one or both legs could also "tweak" the lower back. However, neither of these apply to me at the moment, so I guess I'll just chalk it up to being a paroxysmal symptom, that comes and goes without signaling a bigger problem.

What about you? Have you experienced lower back pain of this nature? How long did it last? What did you do for it (and did anything help it)? Can you think of anything that triggered it? Tell us about your experience in the comment section below.

Read more about pain and MS: Overview of Pain as a Symptom of Multiple Sclerosis

Comments
April 26, 2011 at 5:22 pm
(1) Scott says:

I get this all the time – had it for years before being diagnosed. I have lesions up and down spine – also degenerative disc and two minor herniated discs. Mine lasts hours at times and narcotics do not help.

April 28, 2011 at 4:36 am
(2) Anne Veasey says:

I’m “pleased” to note that its not just me that has degenerative discs in the lower spine. The orthopaedic surgeon thinks that this is a side effect of MS (deep joy – another one!) these now look like a range of hills on my latest MRI scan. I also have the same problem, without the degenerative discs only degenerative cartilege, in my right wrist. I agree narcotics do not help at all. I now have this pain all the time and I’m told it will not go away. Lovely, cheerful people these neurologists aren’t they?

April 26, 2011 at 9:04 pm
(3) Denise says:

I am having those same symptoms currently. It is a pain that comes in twinges, but I have done nothing to hurt my back at all. When I have a “twinge” it is like an electrical sensation that shoots down my left leg and makes my foot weak. Then it goes away. It has only been over the past day or so…so I will just see what happens! Isn’t that how it always is…see what happens, and try not to freak out in the meantime! LOL

May 4, 2011 at 9:57 am
(4) Heather says:

It’s funny you say that … wait and see and not freak out… Everytime I get a pain somewhere my mom asks if we should take me to the emergency room! I keep telling her no its ok, this too shall pass…

On the other hand I opened this email today because I HAVE been dealing with severe back pain. My new job is in an office with only one flight of stairs, no elevator. Its good for my butt but on the other hand it can be difficult to navigate the stairs with my back pain.

I have been using a heating pad and narcotics to ease the pain, but it doesn’t really get rid of it. My mother thinks it might be a kidney infection, I think it is a result of my menstrual cycle. It seems when my cycle hits, I have extreme water retention all through my body which throws everything off. Even though I have never experienced this back pain before I feel it is a direct result of my cycle.

I guess we will see :)

April 26, 2011 at 10:48 pm
(5) Linda says:

It’s comforting to know others have similar symptoms. For the last few weeks, I’ve had pain radiating down the outside of my left leg, from hip to foot – almost like a sciatic pain, but somehow different. It doesn’t last long per episode, but it is frequent. Another one of those “Do I just chalk this up to MS, or do I need to have it checked out?” Life is never boring with MS :-)

April 27, 2011 at 1:02 am
(6) Sarah Rainbolt says:

Sounds like l’hermittes and possibly muscle pain due to spasticity. I’ve been going through severe spasticity and pain due to it in my back for years!! Good luck!

April 27, 2011 at 1:50 am
(7) Daniel K says:

I was going to say like Sarah that this sounds similar to the effect of L’hermitte’s Sign. It is something I experience from time to time, but I wouldn’t call it “pain”.

April 27, 2011 at 2:24 am
(8) Leslie says:

I too have a kind of buzzing lower back pain of varying degrees of intensity, sometimes unbearable but most of the time just “there”, like the majority of my symptoms (SPMS); It usually worsens in the night and becomes really bad in the morning. Walking and stretching help, sometimes there is a sort of “click” and it stops, dulling to pins and needles and electric sensations. When it is so bad that I can’t walk I use my massage chair device for 10 minutes, and then go walking or do exercise (albeit slowly and limping now) to ease the pain. I think it is triggered by heat.

April 27, 2011 at 12:07 pm
(9) Dr. A. Chaifetz says:

Lower back pain is very prevelent in the population where approximately 4 out 5 individuals will experience this is their lifetime. It maybe even more prevelent with some MS patients because of alteration of gait patterns and spasticity of muscles.
Massage Therapy and Chiropractic may be a reasonable option. As a chiropractic physician and MS Certified specialsit, I have treated MS patients for the past 23 years. One has to be careful with manipulation of the neck area, especially with Lhermitte’s sign, but overall most people should favorably respond to massage and chiropractic care if rendered by a practitioner who is familiar with neuro-degenerative conditions like MS. I studied a 3 year post graduate program in Neurology and hold board certification as a “Chiropractic Neurologist”. It may be worthwhile
for an MS patient to choose a chiropractor with advanced neurology training if considering this type of care.

April 27, 2011 at 12:51 pm
(10) megan marra says:

I have this electrical tingling pain from my armpits all the way to my feet and in my hands …not my arms and not my upper back or neck….It does not stop at all and is worse in my feet and calves…I do have a pinch in my lower spine as well..
I have been diagnosed for 15 months and the sensation has n y gotten worse…I am switching to copazone from betaseron and following an very strict diet. Gabapentin (21mgs a day) just makes me stupid, though I do take it…
i am open to any suggestions or ideas..what I would giv for 1 days worth of relief

May 2, 2011 at 4:00 pm
(11) Dee B says:

Hi Megan,
I have never posted on here before but I wanted to let you know that I took Neurontin about 8-10 years ago when my kids were little and I couldn’t stand the “loopy” feeling so I stopped it. About 3 years ago, I started taking Cymbalta for the numbness, tingling and burning sensations down my left leg and foot and it has helped quite a bit. I don’t feel loopy with it. Maybe give it a try. Take care!!

May 4, 2011 at 10:06 am
(12) Heather says:

Hi Dee,

I think it is interesting the different responses with medications. I appreciate your comment though.

I was being treated for Fibromyalgia along with my MS and was taking Lyrica, but after severe edema I finally had to stop.

I finally tried cymbalta, but found that I had severe side effects in the area of depression so I had to quit that.

My doctor finally switched me to Neurotin and I have been happy since. No tissue pain like before, and suprisingly no side affects either. Most importantly I think it is important to pay attention to your body and mind if something doesn’t seem right take the initiative to get it straightened out, dont wait for the doc to bring it up! :)

April 27, 2011 at 1:01 pm
(13) Melissa says:

I don’t have pain but have an area of sensitivity at the end of my spine. If I lean against a counter, or get a massage that far down, or someone hugs me wrong, it feels like I’m being stabbed with a knife!

I don’t have lesions on my spine, and I’ve had an x-ray o f the area recently to rule out ankylosing spondilitis (sp?) & it was normal.

So I just chalk it up to a nerve thing…stupid MS.

April 27, 2011 at 1:24 pm
(14) Jan says:

I also have sensitivity at the end of my spine. I do stretching exercises for that and the pain in my legs. It sometimes helps..but usually the pain in my spine comes and goes.

April 28, 2011 at 3:25 am
(15) Lois says:

In my 40′s I had very bad back pain. I couldn’t sit down without extreme pain in my back. I had cat scans in several places but they couldn’t find anything wrong. In my 50!si was:diagnosed with ms and the doctor told me that was the cause of my pain 15 years before when there was no MRI yet.

April 27, 2011 at 1:06 pm
(16) Bev. says:

I have MS and since I got a tempurpedic mattress – no more back ache. So I don’t relate it to my MS.

April 27, 2011 at 1:14 pm
(17) Carol says:

I’ve always had pain in my back. Suffered with sciatica for years, had L4/L5 laminectomy in 1997. Was in a car accident in 1999 where I suffered whip lash … so my back problems start before my MS Diagnosis in 2008.
One pain that I get now is on the left side of my lower to middle back, like someone is jamming their thumb into me. I also have back pain in my upper back and collar bones, as if someone or something is exerting pressure and pushing down on me. This usually wakes me up in the wee hours of the morning. Another feeling I get almost every day is the tingling sensation in my lower back and buttocks … doesn’t cause me pain, but is a very strange sensation to say the least. The tingling doesn’t last very long – a few hours at the most – but the back pain sometimes last for days. Anyone else suffer this or similar symptoms????

April 27, 2011 at 1:24 pm
(18) Karin G says:

Thank you for your article, here I thought “old age” is creeping in. I have a burning sensation in my inner thight that radiates up my lower back with dull pain and over the counter pain medication does not help one tiny bit. Oh, what “excitement” we have with our MS!!!!!

May 16, 2011 at 12:19 pm
(19) Andrea says:

It is excitement all the time! Never know where its going to go next. :)

April 27, 2011 at 1:25 pm
(20) susan says:

Before I was dianosed with m.s., I had an episode of severe lower back pain. I thought it was from my job and the uneven floor I was standing on all day. I went to a orthopedic m.d., he took an x-ray, which showed nothing and put me on an anti-inflammatory, which didn’t help. A short time later my right eye started bothering me, I thought I was going blind, went to an optomotrist, he suggested I see an nerologist. And that is story of my trip to dianogsis of m.s.. I still have back pain, especially when I am able to walk and do my grocery shopping. But is usually better the next day.

April 27, 2011 at 1:32 pm
(21) Jensequitur says:

Hey, Julie!

I have lots of experience with weird back symptoms. The tingling you describe is caused by the lesions in your spine. Those lesions send out ectopic signals, which travel down and up through ion channels in your spinal cord. I don’t get a painful tingling – mine is more an electrical buzzing sensation.

In my case, it causes a myoclonic jerk of the spine. The sensation feels like it builds in my spine, from a tingling in one location to a tingling in my entire back. Then the jerk happens, and my back arches either forward or back. When I’m having one of those days, my legs get very weak.

My neurologist told me that as these ion channels are improperly used, they ‘learn’ the improper behavior, and I’m more likely to have these myoclonic jerks in the future, and they’ll get worse. I think she’s right – they started out being small jerks, and lately they’ve involved more of my body.

As well as the myoclonic jerks, I was also having myoclonus of the legs. When I’ve been sitting too long, or when I’m getting up from bed, they will tense up and either be completely straight or they’ll try to bend up. This isn’t so bad in the mornings, but if it happens during the day, it gets annoying.

My neurologist prescribed Keppra for me, which dampens the responsiveness of the nerve fibers. In other words, when a lesion sends out false signals, the other nerves don’t pass it along. It seems to help.

I also have back pain from the lesions (usually spasms around the areas) and esophageal spasm, which can be amazingly painful. But all of my back symptoms from MS are definitely caused by the lesions in my spine. I have several in my upper thoracic, and a well-defined one at T10.

April 27, 2011 at 1:39 pm
(22) Pamela says:

I don’t have back pain but get pain in one of my legs from the buttocks to the foot. Its a sore muscle pain that can’t be alleviated with any medication. Today I woke up without it the first time in a very long time……who knows with this disease?

April 27, 2011 at 2:35 pm
(23) janster51 says:

Mine is an all-out on fire burning pain that is constant. It happens when I do any kind of activity-from cleaning the house to going to the market to standing or sitting too long. Right now I am going off morphine gradually and going back on the fentanyl patch due to tolerance but keeping the percocet. No these don’t help the pain at all. Usually only using my heating pad gives me any relief at all and it is temporary because I just go back to doing another activity. I just push through till I can’t stand it anymore. This is my life until I am completely wheelchair bound. I only have to use the wheelchair occasionally now, but I have no illusions. It is just a matter of deciding if I want or need to pay the price of doing a specific chore or activity. There are so many others out there with medical problems much worse than mine though. Bless all of them and all of you!

April 27, 2011 at 2:49 pm
(24) susan says:

Well my low back pain happens in winter I live in No. Ca. above Sacramento, we get snow not a lot but freezing temps and cold rain. This is the 2nd year I’ve had this low back back pain and its worse! The MRI result showed no pinched nerve! the message came via my cell as we were traveling NV. and AZ.
Since I have been in warmer climate and driving my pain is mostly gone! For me I think the climate has a lot to do with it for me?
I’ll be home in 2 days and the temps are 55 for the day time! Yuk
Good Luck All

April 27, 2011 at 2:52 pm
(25) Dianne says:

I have had the same pain you are experiencing now for going on 3 years. I have had and MRI, cat scan and ultrasound on my back. It finds nothing abnormal. Which is good, but I am dealing with this pain which at times is severe!! My doctor has given me medication for the pain, which helps keep it under control but its always there. The only thing that works real good is the patch. But without medical coverage for prescriptions I just can’t afford it. I have tried exercises and they don’t help it makes the pain worse. If anyone has any suggestions let me know.

April 27, 2011 at 4:18 pm
(26) Another Carol says:

I have wondered about the reason for my back pain. I have had to be content with being told “probably MS-related” like so many others. Mine is perhaps best described as a 1/2 MS hug in that it is steady pain that goes across my lower back but doesn’t extend to my front; the pain increases if I exercise or am particularly active; it seems to increase when I get warmer and then I get weak legs and a strange pressing-down sensation, as though something is pushing downward on my buttocks and making my legs too heavy to move. Sometimes I get numbness radiating down primarily my left leg and I know then that I better pay attention as my foot won’t be cooperating.
Yes, things could be a lot worse (and probably will be), but I still don’t want to simply resign myself to this. Wish there were other choices for coping!!

April 27, 2011 at 4:34 pm
(27) Shaunee says:

For some reason in this past week I have woke up with lower back pain, I have had a hard time getting up out of bed because I hurt so bad. Of course I have had lower back pain and upper back pain before I knew that I had MS.

April 27, 2011 at 5:08 pm
(28) suzanne says:

I have had a very similar pain in my tailbone and lower back (very electrical). It is accompanied by pins and needles in my legs and burning feet. Steroid injections and narcotics don’t do anything. The only thing that gives me minor relief is a combination of keppra and gabapentin (both at max doses). I have tried all other seizure meds. The pain is a constant reminder of my ms!!! Swimming and massage help while I am doing them but the relief is short term.

April 27, 2011 at 5:42 pm
(29) Marcus says:

You described my MS experience to a T. The pain for me never goes away. I now take 10-12 vicodin a day. It’s manageable but some days it is pure hell.

April 27, 2011 at 5:46 pm
(30) Marcus says:

Also forgot to mention that I was treated fir herniated disc for two years due to this pain. I had a disco gram that finally ruled out herniated disc. Took two years to finally get the MS diagnosis.

April 27, 2011 at 6:28 pm
(31) Alex says:

So happy and sad to know it’s not just me! I’ve had low back PAIN for years with no real cause – other than MS I was diagnosed with two years ago. I always feel like the MS shouldn’t be the cause of every pain that I feel, but how else do you explain pain for no real reason? When you talk about it with those well-meaning people that don’t have MS it seems like it’s just “normal” back pain. But nothing about my life with MS is normal anymore! Every pain is amplified, every task just a little more complicated. Crazy how this stuff becomes the root of all evil pains that we feel!

June 22, 2011 at 4:39 pm
(32) Gloria says:

I was diagnosed with MS almost 9 years. I have 90% pain. Pain is a daily occurence. I started having pain in my lower pain closer to my tail bone and it continues around to my front. It is mostly on my right side. I have trouble sometimes getting up and down. I don’t know if it is MS related but I know I didn’t hurt myself. My right side seems to be getting worse all the time. The pain actually today is in my feet, ankle, hip, back, right arm. My left leg seems so heavy some times. I also have pain in my neck. I do have ostoarthritis in 5 or 6 discs in my spine. Sometimes I don’t know what to think. So tired and confused in dealing with the daily symtoms of MS.

April 27, 2011 at 6:37 pm
(33) Roger Kirby says:

I have suffered lower back pains most of my adult life, but only after tweaking it in someway. This always meant I was incapacitated in some way, often bedridden, until my back recovered.
However over the last couple of years I have constant pain, but none of the problems/restrictions suffered previously. I have always thought it must be tied up with my vigorous leg spasms and the very pronounced change in gait.
I have begun to suffer from arthritis in a joints which may well have a lot to do with the back, my age, 69, I guess doesn’t help in this area.

April 27, 2011 at 8:15 pm
(34) Lucy Wiggins says:

As I was first diagnosed I had a similar electrical shock feeling going down my spinal column. It only lasted a couple of minutes. MY plaques are located in my upper spine (neck area).

April 27, 2011 at 8:18 pm
(35) Sherri says:

I’ve been experiencing hte same type of thing. Not really back pain, but leg pain…

April 27, 2011 at 9:52 pm
(36) Karen Beth says:

I have had the MS hug and lower back pain off and on for about 5 years. When I try to exercise my core and lower back with certain moves I sound like a popcorn popper. I have degenerative discs but the pain comes and goes, so I am convinced it is MS related- of course try to convince the doctors of that!

April 28, 2011 at 12:28 am
(37) Mary Cook says:

I’ve had excruciating lower back, left side si joint, left hip pain for years. Feels like a knife is stuck into the si joint, and causes sciatica down the back of my left leg. Sometimes my sacrum feels like its swollen and it hurts. MS doctor doesn’t think it’s ms related. She has sent me to a pain management doctor. This doc has done steriod injections into the facet joints, with no change, and then did a nerve root block in the S1 and L5 nerves, with no change. I take Tramadol for the pain, but it doesn’t make it go away, just takes the edge off. I’ve tried PT, AROSSTI, massage, acupuncture and nothing seems to help.
I’ve had many MRI scans over the years, and they all come back normal. How can this be normal when I’m in pain ALL the time?
Anybody got any other great ideas on how to deal with this?
Thanks,
Mary

April 28, 2011 at 9:14 am
(38) Kimberlee says:

I had pain start at the base of my neck one day. It was a nagging feeling like my neck kept stressing. As the day progressed it felt like I had a sunburn on my upper back. It was so painful to the point where I couldn’t even have anything rubbing on it. It also just felt so swollen and so
much pressure. By the next day it was gone. It happened again the week of my wedding and I immediately went to
my neuro. He had me get a MRI to see if there was any new lesions and sure enough there was one at the base of my spine. Since I’ve been on rebif I haven’t had a relapse like that since november *knocks on wood*

April 28, 2011 at 7:17 pm
(39) moe says:

my back pain is in the lower part of my back. Its like little spasms. it alarms u real fast of the pain. it usally doesnt last to long. but long enough.

May 1, 2011 at 7:11 pm
(40) Kathleen Shea says:

I have this pain in my back that is worsened by tight clothing or elastic around my waist or the activities of the day. Sometimes it is helpful to lie flat for as little as 15 minutes. I have had MS for 41 years, am ambulatory and fairly active. This pain affects me every day. It limits my choice of clothing. my activities and by the end of the day I am ready for rest.
I am going to try acpuncture for relief of pain. I will let you know if it helps.

May 9, 2011 at 3:44 pm
(41) Tammy says:

I am so glad to come across this article and comments! I am currently going through all the testing for MS but have had severe lower back, sacrum pain with this same electrical shock sensation. My hips and SI joints also hurt most of the time. Been in Physical Therapy for over a year, and no help. Thanks for bringing this into light!

May 16, 2011 at 12:27 pm
(42) Andrea says:

Try doing a combination of massage and physical therapy. I have a therapist help me reverse muscle issues with exercise. I go every week to Massage Envy for deep tissue massage with aromatherapy. This is on-going all the time — every week is best. We deserve if even just a moment without some suffering feeling.

Ask your neurologist to write a prescription to physical therapy and for massage (two different prescriptions).

May 19, 2011 at 7:45 pm
(43) Jenny says:

I had a friend with similiar symptoms…turns out she had kidney stones….some she had to pass and some she had lasered…..she had this tingling on and off and lower back pain and numbness for years……and now she is great….so maybe some of you might want to have an ultrasound done on your lower back, kidney areas.

June 22, 2011 at 3:17 pm
(44) Gloria says:

My pain is in the lower part of my back, closer to my tail bone and the pain also travels around the front. It just started last night. I have had it before. Sometimes when I go to get up or sit down the pain gets worse. I am finding my right side worse. The pain is in my right foot, ankle, knee, hip, arm. My right leg especially seems really heavy, almost like I’m dragging it. I’m not sure if it’s my MS or not. Never really sure or not. Always confused when it comes to my symtoms.

September 19, 2011 at 3:41 am
(45) Cindy says:

I have the similar symptoms… :-(

December 24, 2011 at 2:53 am
(46) Candace says:

Hi. I have MS. I’m 24 and was diagnosed while AD Air Force last year. I’m on Tysabri because Rebif didn’t work for me. I have “too many lesions to count” so they put me on a more aggresive medication. I started taking Hydroxycut Max 2 weeks ago against doctor’s orders. I feel pretty stupid right now because I’m having lower back pain on my left side. I’m going to stop taking the Hydroxycut for now, at least until I can get a blood test to make sure it’s not anything going on with my liver caused by the diet pills. I feel like something is grabbing my muscles in that area. I don’t know if this is MS or Hydroxycut related. Since being medically retired from the service I don’t work out as hard as I used to and I’ve gained a few pounds. I just wanted a little kick from the pills. My MS specialist is on vacation until January 9th. Can someone help me please? Has MS ever made you feel like this?

January 4, 2012 at 5:28 pm
(47) swankie says:

i got a pressing pain in my back one day while i was watching T.V and it began getting worse i have never had such a pain before,i tried muscle relaxers but they didn’t work ,when i couldn’t take the pain anymore i went to the hospital where the doctor diagnosed my symtoms as sclerosis. It was very scary i am scared that the pain is going to come back since the doctor told me there is no cure.

January 31, 2012 at 10:33 am
(48) Faye says:

I just started with this brand new PAIN. Started 24 hours ago in my lower back. Have not experienced pain like this since my cervical spine surgery a little over a year ago. Feels like burning, aching in my kidneys more than musculoskelital. Worsens as the day progresses. Called and left a mssg with my neuro’s nurse early this morn and am awaiting for a return call. Also started tremors about a month ago. New symptom too. Pain in low back almost unbearable! Don’t want to over-react, but is this kidney related. No burning in urethra at urination. Temp 99.6. Ah, just talked with nurse, she told me to call my family doc (???) Just left a mssg. there….Any suggestions?

March 7, 2012 at 6:18 pm
(49) Hope says:

Hello,

I was diagnosed with a very progressed form of MS on March 6, 2009; meaning that I had so many lessions in my brain and spine that the Neurologist could not believe that I had not been seen for this before seeing him.

I have failed 2 drugs…Rebif and Copaxone. My White Cell count is constantly elevated at 15 (for over a year now) and my Platelets are have been elevated to 527 and I am currently at 498. Have seen an Oncologist and had a bone marrow biopsy. The Oncologist doesn’t know what is wrong (even called me an anomoly), even my Neurologists cannot confirm what is the culprit.

I am now on Tysabri. I have been tested for the JC Virus and have had a positive response; meaning that I have been exposed to the Virus. Since I started taking Tysabri in March of 2011, I have had little to no improvement. In fact, walking has become more difficult and my falls are becoming more frequent; even with the use of a cane. I am in PT, but this is doing little for me.

Now, since roughly the last week of January, I have been having extreme back pain. It moves all the time; meaning one day it is my lower back, days later it is my upper spine or shoulders. I have yet to have one day without this pain. I am now on Baclofen, but this is not helping. This pain is now impacting my arms (causing pain in the upper arm and numbness as it moves down towards my wrist). I am also having major sensitivity to light and my left eye vision is not clear.

I saw one of my Neurologists last week (yep, I have 2 of them) and he doesn’t think the back pain or vision changes are truly related to my MS. However, he doesn’t know what it could be or who I should see.

Does anyone here experience these syptoms? If so, what has worked well for you?

Any help or suggestions would be greatly appreciated.

May 21, 2012 at 5:54 am
(50) Jay says:

I get this pain everyday for hours. It go’s down to my legs and feet, the only thing that works for me is weed.

July 9, 2012 at 12:35 am
(51) Elizabeth says:

I’m in highschool and was diagnosed with sclerosis in the 7th grade. It began I woke up at 11pm and my lower spine was aching and stabbing. I lifted my shirt up, looked in the mirror, and while one of my sides was normally aligned, the other was pinched and pulled, so that it looked like I was bending. When I bent forward and asked my parents about my spine, they said it was crooked. I have often had extreme neck pain like the sclerosis, and many days in Elementary school, I had to stay home because my neck was hurting so horribly that I couldn’t even move it. I know how you feel. I have to say, no, the pain releivers do not usually work. But go see a doctor about your spine, and then the physical therapist. A few months of treatment helped temporarily for me, but now, almost three years later, the pain is back.

July 9, 2012 at 10:42 am
(52) Ender Berett says:

I’ve been working with rare diseases lately, but I’ve never heard of it before. Thanks for the post. Does anyone know if this if more or less rare than hereditary spastic paraplegia? That would give me an idea of how rare it really is.

August 6, 2012 at 6:29 pm
(53) Asaf says:

Ive been suffering from tremendous back pain(at the middle of the back and in the joints) and it feels like someone is stabbing me with a knife . Also i have parallel pain from the hip to the ankle- sciatic.
The pain is so severe that i can only sit for 5-10m minutes every day- and this has been going on for 17 months.
I was diagnosed having MS 3 months ago(although i have herniated disk my orthoped says there is no such orthopedic pain from herniated disk.)

Usually the pain is 9 from 10 but if im lucky imight have a day that is 6 from 10. there are also electrical waves but they dont bother me
the only thing that relieves pain a bit is smoking-inhaling medical canabis on a daily basis.

September 18, 2012 at 2:58 pm
(54) Marian says:

Until now, I had not been aware that MS could affect the spine. I woke up with my left hand and fore arm numb. I was shot full of prednasone and have about 40% back. My DR said that my MRI seemed the same and she thought that this attack came from my neck. No other explanation, so I came home and got on the internet. I have no medical insurance, so have county assistance and have no choice on the DRs I can see. I have degenerative disease in L4, L5 & S1, C3, C4, &C5, and have knot at the base of my skull on the right side. I have had the electrical shocks that go from the base of my skull all the way down the the bottom of my feet. I have begun walking with a cane on my left side to keep me from leaning to the right then overcorrecting to the left and staggering. It’s embarassing to be stopped on the street by the PD to be checked for public intoxication. Oh, I also have fibromyalgia, so never know if my some of my pain, memory loss, cognitive thinking, and fogginess is which. I forgot my grandson’s name for 2 mos. I finally had to ask my ex-boyfriend. I was too upset to call my daughter.

October 5, 2012 at 1:56 pm
(55) Jan says:

Marian — Does your doctor really think that at this point, 40% relief is acceptable — that the paltry effect of only one drug is ok?? Aim for at least 80% improvement. People react differently to different medications. Maybe your doctor should prescribe a new medication or combo, and MONITOR the attempt to reduce your pain. Sorry — but maybe you need a different doc. Take care.

October 8, 2012 at 9:49 am
(56) L says:

Has anyone tried hypnosis for the pain?

November 2, 2012 at 3:07 am
(57) john says:

Hi My name is “john” just want to share my experience with the world on how i got my love back and saved my marriage… I was married for 7years with 2kids and we lived happily until things started getting ugly and we had fights and arguments almost every time… it got worse at a point that she filed for divorce… I tried my best to make her change her mind & stay with me cause i loved her with all my heart and didn’t want to loose her but everything just didn’t work out… she moved out of the house and still went ahead to file for divorce… I pleaded and tried everything but still nothing worked. The breakthrough came when someone introduced me to this wonderful, great spell caster who eventually helped me out… I have never been a fan of things like this but just decided to try reluctantly cause I was desperate and left with no choice… He did special prayers and used roots and herbs… Within 7 days she called me and was sorry for all the emotional trauma she had cost me, moved back to the house and we continue to live happily, the kids are happy too and we are expecting our third child. I have introduced him to a lot of couples with problems across the world and they have had good news… Just thought I should share my experience cause I strongly believe someone out there need’s it… You can email him via ekpensolutionspellcasting@gmail.com Don’t give up just yet, the different between “Ordinary” & “Extra-Ordinary” is the “Extra” so make extra effort to save your marriage/relationship if it’s truly worth it.

November 4, 2012 at 10:44 pm
(58) oporter says:

Pain is crazy all the time ..my arms and hands as well as half my body goes to sleep painfully lower back gets bad like butcher’s kknife being jabbed and legs are weak not to mention head pains ..diagnosed 5 years ago was being treated then they just stopped want me to retest everything all over I can’t afford it now I get a what if they was wrong wouldn’t you want the truth..I hsve it and because of them its getting worse ..speech off I’m drooling getting very dizzy and nautious and pain omg I can’t take it ..what can I do I feel like I have to move to my old doctors. 1000 miles away to b helped..somone tell me what u would do.

November 20, 2012 at 6:07 pm
(59) Daniel says:

I have been having these sharp burning pains in neck, back of head, back and lower back. These areshooting at times down my spine com left leg. Also, have burying and skin sensitivity around lower left rib and joints of left rib cage. All of these are intermittent and brief, but have been off and on for over a month. I recently moved and am scheduled for first appointment with doctor in January. Should I be more concerned and go to urgent care or just endure till January? Anyone else similar experience? I don’t want to spend unnecessary funds since I am loved on resources, if it’s not going to harm waiting. I am in pain often.

December 8, 2012 at 9:28 pm
(60) George says:

Julie
I experience the identical sensation. For me its like a tiny feather in the l4l5 area tickle tickle until it turns into pain. Its insane. I have a baclofen pump and it doesnt even address it. Its the whole nerve, axon, lesion, confusion bs. Only ice helps me. Seems to throw the signals off. In 4 short yrs im only able to sit up for 4 hrs throughout the day and have been all over the country seeing the best. Been in stem cell trials did the ccsvi you name it. Its a thief. Bottom line…..

December 16, 2012 at 1:31 am
(61) Kelly says:

My pain is blunt like the concussion of an explosion radiating from the base of my spine in both directions (head / feet). It lasts for about a second and is extremely painful but not sharp.

January 2, 2013 at 7:48 pm
(62) sharon schlaeppi says:

I had an MRI and they diagnosed me as having a slipped disc. The back pain has caused me to have trouble sleeping. This has been going on for 25 years but now I hardly sleep more than a few hours a night. My pain is in my tailbone and just above it. if I apply heavy pressure on this area can get a little relief. The pain is hard to explain but is similar to a tickling, burning, pain and it make me want to move my legs and body to relieve some of the tingling. I used to get some relief with a back vibrator but now it no longer helps me. I get up and without the pressure on my spine it feels better. In the past few months my tingling has also affected me in the daytime but is unmangeable at night. My bladder feels like it is tingly and my legs feel the same. I have had some relief with a chiropractor and once had cortisone that didn’t seem to help. Not sure what to do anymore as I am tired all the time but can’t sleep due to this tingly, burning sensation. I think it is a nerve that is compressed as when I hold my hand tightly over the lower spine it gives me some relief. I am getting a sore spot in that area and it feels like my skin is soft like tissuue paper. Please give me some advise.

January 8, 2013 at 5:34 pm
(63) TYU says:

Mine started in a buzzy, “electrical” way as well at my lower back or more precisely around my tail bone. It feels like a match being lit to this area followed by near complete numbness in my left leg. It started occasionally over the past several months, but has picked up to daily within the past week typically early morning around 5-6am. The pain is such that it wakes me out of a deep sleep. I finally called my neurologist when this affected both legs. On average this sensation last no more than 5 minutes.

My neurologist believes that it’s an indicator of a relapse. He’s prescribing a 6-day oral steroid treatment to ward off a relapse (i.e., 6 pills day 1, 5 pills day 2, etc.) .

Has anyone else who has experienced this done the oral steroid treatment as well? Did it work? Any advice on dealing with possible steroid side-effects? This is my first steroid treatment.

I have definite MS, diagnosed over 10 years ago, taking Avonex for drug therapy since 2009, and this is my first relapse.

Greatly appreciate any feedback!

February 20, 2013 at 1:10 pm
(64) jane says:

I have lower back pain very bad that it limits walking and on my hips nothing takes my pain away i think its related to ms i have trouble swollowing exsept my pain is there at night and in the morning only get small relapes iv pain most of the time srong cocodamol with codedine help a little but still i feel pain.

March 22, 2013 at 1:31 pm
(65) Jade says:

I was diagnosed in 2001. But the Neurologists here claim that my lower electrical feeling back pain that makes me go down as if I were walking down stairs is because I also have a form of severe Fibromyalgia. I got out of the wheel chair after 4 months much to the Neurologists surprise. I WON’T take Morphine, Solucortif or Tramaset.They ALL cause weight gain that only worsens the pain. I take a few other meds but get Interferon in small dosages on a Pilot Project for people with MS.This lower back pain, it is electrical like but no one else I knew had claimed that and it puzzled the Neurologists.It goes across my lower back just below the Kidney area and travels down my legs right to my feet.I get the same in my hands,arms feel numb or tingly like they fell asleep. Visual changes are constant,& I’m told the severe 5 day Migraines are ONLY from Fibromyalgia. But the back/leg/feet thing began when I was 12. I wore special Orthopedic shoes all day and had a pair for sleeping in. This for 3 years then ONE MS Neurologist who began the Interferon treatments TRIED to say, SOLELY based upon my gait, that I did not have MS.He only had me walk from the clinic bed to his desk chair.But other Neurologists did all the scans, MRI’s, CAT’s, and PET scans.I’m 48 now, female,I fall more, my gross motor skills and speech have worsened. & relationships? My ex husband of 14 years ( We married when I was 15 and he was 17 then divorced when I was 28 ) said, ” Doctors should give ALL people like you a drug to kill you ALL off.I found acupuncture and Foot therapy to work better than most things have, chiropractor messages etc do nothing to help me. The pain is so hard to describe to people without MS and even some with MS.. If anyone thinks it gets better in any way? Please. Let me know.

April 25, 2013 at 7:17 am
(66) Arushisharma says:

Wow Its a great post I must say.. Simple but yet entertaining and engaging.. Keep up the good work!
Good going……!!
Medical Clinic in Silver Spring

June 17, 2013 at 6:41 pm
(67) Jenell Murphy says:

Hi everyone, I live in Sydney Australia & I was diagnosed with MS in 2003. I have been through all treatments Betapheron, Copaxone, Tysabri & now on oral tablet Gilenya. Gillenya has worked very well for me & by far the best treatment for me. I have many lesions in my brain too many to count, but they have not changed since being on Gilenya. My white cell count is one side effect from Gilenya so very open to infections but luckily haven’t had any! I also have Lupus but it has settled for a few years now perhaps due to all the steroids I have had. As well, I am now suffering from very bad back & R hip pain. I take Baclofen for spasms 2-3 times a day, have found that Cymbalta, Epilum & Lyrica have helped me. Try also hydrotherapy with a physio & massage will help. Also I hope to lose some weight, have gained a lot due to reduced mobility & steroids. Good luck everyone, it’s good to know I’m not imagining the pain, at least we can share our stories & ideas & know we are not alone.

July 31, 2013 at 6:39 am
(68) kathleen hartslief says:

To the young lady with relapsing/remitting M.S. : I hope you are already on an M.S. treatment like Betaseron, or one of the others, prevention is all you have on your side. Even if the Dr.’s cant. “see” M.S, in your lowere spine, it’s all connected!! The pain and tingling you. feel in your legs goes down the ouside doesn’t it? I told a Dr. once that it felt like all th blood. was being drained from them, actually I told that to quite a few before I waz diognosed. Finally I met a Dr. that responded saying. that it wasn’t blood. but spinal fluid. that was missing. It also circulates and feels the same when drained. Your legs are being cut off from your spinal cerculatory system. Its called ” nocturea” when you pee all night. We old timers of the M.S. rutine call it “exercise” … hope you fair well and remain healthy and. strong!!

July 31, 2013 at 7:22 am
(69) Kathleen Ellen Greer- says:

I’ve been living with MS for 13 years now, and I told many Dr.’s. about the feeling of. losing all the blood in my legs. One finally explained that the Neurvous systen is like the cerculatory cystem. The spinal fluid is being cut off or at least interupted with the loss of. the sheith that MS likes to distroy. People who have had MS. for a while know about banging on their leggs…trying to wake them up.
I have wondered if the amazing amount of pee that comes out of us occasionally ( usually at night/nocturia) isn’t extra spinal fluid, or just body fluid trying to make up for it, escaping the only way it can!!
Keep your scence of humor, prevent anything you can, and don’t let anyone tell you somthing you know isn’t right for you. Eveyone is different..stay on somthing like betaseron, neurontin will help the pain or jerks. Get into yoga and. vegitarian diet w high protein.
Ginger will help the pee attacs, eat it every day, MS is inflamitory and ginger is like IB prof without the side effects. GOOD LUCK LUV!!!

August 18, 2013 at 12:33 pm
(70) Lisa olson says:

Does anyone else ever feel like your back is just giving out on you.? The lower part of my back feels like it’s giving out on me.I I really noticed it while i was standing doing the dishes..there really wasnt any pain just the issue of it feels like I’m gonna drop…

August 18, 2013 at 3:49 pm
(71) Annie Brodrick says:

in ’96 I hurt my back when I was helping to move something very heavy and instead of waiting for the count of 3 I started on 2 and I was like something from an old movie because I was in horrible pain & could not stand up straight !
Today this same pain started after climbing one flight of stairs and 3 hours later and I cannot shake the pain. I’ve had MS for 13 years now and find myself wondering ‘now what.’

August 30, 2013 at 7:03 pm
(72) Holly says:

I am in the process of waiting for the results of my latest MRI to see if I have any lesions in my neck or spine. My back has really been feeling weird the last three days. It is not so much pain as pressure and feeling really tight. It feels like I have a board attached to my back so that I just can’t really move it .I am a sloucher and I have been sitting and standing straight now for days, which is not usual for me. The feeling is very annoying to say the least, but not painful or debilitating. I am not sure if this makes any sense or not, but I am wondering if any of you have felt the same way, and if this does have anything to do with MS. I have the lesions in my brain and I am being told that I do have MS, but we are waiting on results to see what is going on in my back.

December 6, 2013 at 8:47 am
(73) terri says:

As most of us with MS know we tend to ask ourselves the question: is this’d because of my MS? – for everything that hurts. I find this so frustrating. I have had severe lower back pain (Mostly radiating OK n the right side) for about two weeks now. I have run through the questions through my head of how and what I did to cause this pain..or is it a kidney infection etc etc…blah blah blah… Is this our life now_? To just endure whatever this disease throws at us?!

March 24, 2014 at 6:11 pm
(74) Joyce Lefear says:

Lower back pains,burning at the base of neck and neck get uncomfortable often,also right leg feels like I forget to pick it up to make a step.Was in accident and have been told that I got two buling disc.Will it get better?

April 28, 2014 at 5:26 pm
(75) kymberly says:

I’ve had M.S. since 2003 I’m experiencing lower back pain,I’ve had it for three weeks now, it’s a burning crushing feeling I cant stand or walk or sit for long periods of time.I find that ice packs help. So when I’m outside I take ice packs with I have a bulge in my back but my back it not burning as bad.

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