Do you live with pain because of MS?
 

I was diagnosed 15 years ago and had no type of pain, now since Oct. I have pain all the time in my legs, it doesn't go away without meds, the doc put me on Lyrica, but couldn't afford it so he prescribed Neurontin.
I have asked this question before but no one has answered me, Does this mean that MS has progressed to this point? I don't really know how you can tell if it has progressed, I am on LDN and haven't had an attack in several years, new symptoms, yes, but this pain is wearing me down, because of the neurontin I have to take something else for bad constipation. Seems like my life is not my own anymore, I am always taking meds. I guess I don't have any choice, just wondering about you. Can anyone answer my question.

I've been dx since 2005 but I'm sure I had MS for years before.

I haven't had constant pain. But....like this past week with the high humidity and temp changes....I've had spasticity. The "hug" has ruled my life for the past week but it has nearly gone away today. The humidity is lower. :rolleyes: I'm like a walking weather vane.

I took Neurontin for a while. It didn't really help me too much, but it did cause me to gain a lot of weight. I haven't taken it in over two years.

I take LDN, too, and it's done more good for me than all the doctor prescribed meds combined.

I took Baclofen for a few days with this recent bout of spasticity and it did help a little....but made me so tipsy and unbalanced. :mad: I took 2 Aleve Saturday afternoon and it did more good in one dose than the Baclofen I had taken for 3 days! :rolleyes:

So, I haven't dealt with constant pain. Just sx related pain. The only prescription meds I take (besides the LDN) are for non-MS conditions. I take a HPB med and also a thyroid med. Plus I take a helty dose of Vitamin D3 each day. That, I believe, has helped me more than anything.

For the constipation, have you tried eating Activia daily? I just started it a couple of weeks ago and that stuff is amazing. I can't believe it took me so long to try it!

Hope you feel better. Sometimes the meds we take for one problem cause bigger troubles in the long run. :rolleyes:

MS is a TWO STAGE DISEASE!!!

1st is THE INFLAMMATORY Stage - Standard DMD work well here.

2nd is the NEURODEGENERATIVE PHASE The Standard DMD is weak and mostly unknown. However LDN may be effective for this stage of MS. In classic MS you have about 10 years of R/R MS followed by the next, 2nd phase which severly reduces mobility and loss of leg strength with leg pain. Treatment with DMD during R/R stage could delay or hopefully avoid this stage.

LDN appears to counter the second stage.
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http://autoimmunedisease.suite101.co...rosis_variants

http://home.ix.netcom.com/~jdalton/ms-two-stages.pdf

http://home.ix.netcom.com/~jdalton/two%20stage%20MS.jpg

http://home.ix.netcom.com/~jdalton/two%20stage%20MS.jpg


jackD

I am PPMS so I am not sure if I can be of much help.

I take lots of prescription medications so I understand how you feel your life revolves around taking pills.

I have pain all the time but it is on a low level. Sounds like your pain is higher.

Is your MS advancing? I do not think anyone, not even your doctor, can tell you.

Maybe is it an exacerbation which can last a long time, months? Not sure of my information on that but I am pretty sure.

Let's go with the idea that it is temporary.

I have had RRMS for over 20 years. I have pain in my hands, along with cramping and numbness, which got worse over time but has been the same for a while now and I've been on Nortriptyline for years for it. I also expierence pain in my right leg, which has gotten worse these past few years. Fortunately it's not to the point where I feel medicine is necessary (or I'm just being stubborn). Not sure if my story helps you or not, but I hope it does.

I was dx'ed with MS in early 1988. I've always had pain associated with it - first one was lower back neck pain for the first 15 years. Neuropathy kicked in in 2007 - horrendous foot and lower leg pain. This s**cks.

I'm still not noticeably impaired, so nobody knows I have MS except those close to me who I've told. Still work full time, etc.

I don't take anything for pain or MS. I do take blood pressure meds and B12 and stuff. I had open heart surgery in 2004 for an ascending aortic dissection and my right illiac, left illiac and abdominal aortic arteries were bypassed in my abdomen in 2008, so I have more than MS to worry about.

Since we spent a healthy chunk of today planning our annual hiking vacation for the year (southern Utah this year), I don't think I'm planning on any of these issues slowing me down any time soon. I've got shuttle missions to work around in April, May, and July, so our vacation gets relegated to June.

Tom

11,236 Transected axons per cubic millimeter
 

11,236 Transected axons per cubic millimeter CAUSES PAIN!!

jackD

"1: N Engl J Med. 1998 Jan 29;338(5):278-85.

Comment in:
N Engl J Med. 1998 Jan 29;338(5):323-5.

Axonal transection in the lesions of multiple sclerosis.

Trapp BD, Peterson J, Ransohoff RM, Rudick R, Mork S, Bo L.

Department of Neurosciences, Lerner Research Institute, Cleveland Clinic
Foundation, OH 44195, USA.

BACKGROUND: Multiple sclerosis is an inflammatory demyelinating disease of the
central nervous system and is the most common cause of neurologic disability in
young adults. Despite antiinflammatory or immunosuppressive therapy, most
patients have progressive neurologic deterioration that may reflect axonal loss.
We conducted pathological studies of brain tissues to define the changes in
axons in patients with multiple sclerosis.

METHODS:
Brain tissue was obtained at autopsy from 11 patients with multiple sclerosis and 4 subjects without brain disease. Fourteen active multiple-sclerosis lesions, 33 chronic active lesions,
and samples of normal-appearing white matter were examined for demyelination,
inflammation, and axonal pathologic changes by immunohistochemistry and confocal
microscopy. Axonal transection, identified by the presence of terminal axonal
ovoids, was detected in all 47 lesions and quantified in 18 lesions.

RESULTS:
Transected axons were a consistent feature of the lesions of multiple sclerosis,
and their frequency was related to the degree of inflammation within the lesion.

The number of transected axons per cubic millimeter of tissue averaged 11,236 in
active lesions, 3138 at the hypocellular edges of chronic active lesions, 875 in
the hypocellular centers of chronic active lesions, and less than 1 in
normal-appearing white matter from the control brains.

CONCLUSIONS: Transected
axons are common in the lesions of multiple sclerosis, and axonal transection
may be the pathologic correlate of the irreversible neurologic impairment in
this disease.

PMID: 9445407 [PubMed - indexed for MEDLINE]"

Jim has always had pain. He is currently on 30mg a day Methadone and it works well. Of course he takes a gazillion other meds too like muscle relaxers and such. He's a walking pharmacy. But without his meds I'd hate to see where he'd be right now. There is no shame in taking a medicine that helps you lead a somewhat normal life.

Just lots of :hug::hug:for you Poochie and for all of you in pain.

poochie have you tried Magnesium tablets? Many people with MS are low in Magnesium. It helps with leg pain, cramps and constipation too. I take a lot but I am used to it. Try a 250 mg tablet. A few (3) keeps me normal bowel wise, pain wise, more (4 to 6) and it is the same as Milk of Magnesia, the laxative.

I take LDN too. That has helped with many types of pain and it is a mood lifter. I gave up on Lyrica, Neurontin and any other pain medication.

I have burning pain in my tops of my feet and legs. Nothing works for that for me. The LDN makes it tolerable, so I just deal with it.

Medication can cause problems you haven't had before, so be weary. They also can conflict with foods, herbs, and OTC meds too. I hope your pain gets better.

I don't believe pain means you are progressing. JMO :hug:

Poochie, I can identify somewhat. What used to be mild prickling all over has gradually graduated to what now feels more like stabbing and causes jerking in whatever area it happens. I also experience painful muscle spasms in my lower back where the muscles are weak from surgery. ALL of this pain keeps me from sleeping. It is very depressing and just doesn't give a lot of hope for the future. This pain and exhaustion is why I haven't been on NT much at all lately.
But I miss you all and luv you.
I hope you find the answers you are looking for Poochie.:hug:
And a :hug: to the rest of my friends!

Hi Poochie! Yes, I live with constant pain 24/7 due to this miserable disease. I HATE IT!!! Today has been an especially bad "pain day" and then depression comes along with it. I was diagnosed in 1990, same year I was divorced, so have dealt with it totally alone. Didn't have pain for about five years, then started with a pain in the right buttocks -- a literal "pain in the butt"! Since then it's gone on to affect my entire body.

The doctors first thought I had developed fibromyalgia because of the all over pain, but now I'm not so sure because it's a nerve pain, burning, sharp, stabbing, and not in the muscle itself. I'm now considered secondary progressive and am in a chair since my legs don't listen to me anymore. Your neuro would have to diagnose what stage you're in and if it's progressed. I am able to stand up for a couple minutes at a time while hanging on for dear life -- balance is shot -- but I still live alone with help cleaning, etc.

I'm also on LDN after trying Beta, Avonex and Novantrone with horrible results. It, plus two Aleve daily seem to help the most and usually takes the edge off the pain. Tizanidine for spasms and sometimes Carbamazipine for pain also. Meds for bladder issues, depression, mitral valve prolapse and Atrial fibrillation round out my daily "cocktail". Oh yes, omeprizole too so I don't get ulcers from all of the above!

Guess we just deal with the hand we've been given and try to make the best of it, although sometimes it's sure difficult! Neuopathy in my feet along with lymphedema from immobility is painful too and makes wearing shoes or anything confining on my feet like socks, impossible. As "Friend" said, it does wear you down after awhile, but then a good day (relatively speaking) comes along -- the sun shines and things don't seem quite so bad.

Hang in there and if you ever want to PM me, feel free. Sometimes knowing someone else is dealing with the same things helps a little. Take care. :)

Yes, pain is part of life here too. I had right leg numbness that was substituted with pain as feeling came back. My neuro spec won't admit that pain could be part of my disease. Nor is my confusion, inattention, weakness, facial weakness or sensory problems come to that.

Feel better.

and JackD, thanks (not) for the 10 year life map. I really hate the '10 year prognosis' thing. It weighs heavy on me every time I see it. :(

Thank you so much, I know I'm not alone, although I hate it that you are with me on this, tomorrow I will have 3 grandchildren, they are like a happy pill, hopefully they will take my mind off this horrible disease. I have to remind myself that it could be worse and I just have to deal with it today, tomorrow will take care of itself. Thank you all.

hugss Poochie from here too...

I am undx, but lots of MS like symptoms..

I am on neurontin for nerve pain and it helps.. but this is nerve pain like numbness/tingling pain.

I am on baclofen for stiffness/spasms

I am tired of the pain that I do have, and also hate being on meds...
'
wishing you better luck with less pain... might mean some progression but hard to know... as like many here have said they may have dealt with pain thru out... and here I am with painful days without even a diagnosis...

hugsss and we understand, sarah