disability vs pain

[sbr487]

I have been meaning to ask this question for a long time now.
Looking forward to comments from people WITH ms.

I do have typical symptoms of MS like blurred vision, bulged disc, stiff back, gerd, fatigue ... . But don't have any major disability as such.

When I look back at my last 16 years with MS, I have always found that pain, spasticity, fatigue have been my main problem and not much disability.
I have seen people who seem to have issues with disability and (again, my reading based on their posts) and don't seem to have much issues with pain.

I am wondering if there are others here who have had same issue.

Thanks again ...

[SandyK]

Hi. I'm coming on year 17 with MS. My biggest problem has never been pain, always the walking issue.

[elyse_peace]

Yeah, nobody seems to mention pain.
When I was first diagnosed, I read a letter from a woman who had also been newly diagnosed. She particularly said her doctor told her, "You have ms. You will not be in pain. ????!!!
Mine pain is here and there, off and on. Stabbing, fleeting. Not a continuous issue, not my most difficult, but . . . Damn. Pain is pain. It hurts. That's why they call it PAIN.

[gibbledygook]

My first symptoms were loss of walking ability within months loss of bladder control and significant burning pain and terrible myoclonus/night spasms. I was immediately given an EDSS of 4. I think I'm rather an exception and most people start with a milder or at least a less disabling form which doesn't involve the motor systems. However I doubt that there is a fundamentally different physical process going on.

[jgkarob]

Hi,
I'm not particularly impaired either. I'm a fairly classic RRMSer and have had disabling relapses, but have always recovered mobility (although at times it took months).
The pain started within two months of diagnosis (2000).
It's located in my lower limbs, below the knee and elbow joints and if it wasn't for Amitriptyline and LDN and diet, I would feel like I was wired up to a car battery.
Spasticity is a problem too, but only in my right leg (LDN has helped with this) and my bladder isn't great, but again LDN has helped.

0h, the joy of spasms too. The classic 'hug', internal muscle spasms and the delightful rectal spasm. Thank heavens for diazapam!

Before Amitriptyline/diet/LDN I was finding that the tingling/burning pain would start up first thing in the morning. It would be fine whilst walking and then be horrendous for an hour afterwards.

I have responded well to Rebif and have been taking it for 10 years, with only injection site reactions, no flu.
Before Rebif, I was being ill (before diagnosis) every 6-8 weeks.
After it got going, 4 relapses in 10 years. Not bad.

The pain is worse when I'm tired.
Awful if I eat gluten.
It disappears completely with extreme stress, but then I lose the connection with my limbs and speech. Thank goodness this happens only very rarely.

I also have cold hands and feet - which are much worse when I'm tired.
I exercise a lot, which helps with the circulation and pain.
I also think that Vitamin D3 has helped too.

Pretty much all of my symptoms are invisible.
I can still play the piano as badly as I did at music college and you wouldn't know I have MS unless I'm recovering from a relapse.

I think you may be on to something here. I wonder if MS researchers are interested, or any studies have taken place?

[jimmylegs]

hey there, pain can result from various deficiencies, and especially when spasticity is involved, i would be highly suspicious of and looking at testing vitamin D3 and magnesium levels, for starters.