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Do you believe that the relief of MS pain consititutes a 'remission' in your MS?

Earlier, a respondednt named LULU stated: "BTW - when I am in a "remittance" I know it because I feel good.  It doesn't happen often, but it's like the veil has lifted, I see sunshine, feel like my body is all connected, etc. "

This answer talked to me. It resonated.

I have had MS for a  long time. I am 75 and was finally diagnosed in 2000 as MRIs became available and so amazingly helpful as a diagnostic tool. I had brain lesions, spine lesions and also 'failed' my 'evoked potential testing' (meaning that the responses to nerve stimulation of my left side dragged in comparison to those of my right).  I was initially diagnosed as RR, two, three years later: "perhaps progressive RR'; then two-three years later again: "perhaps progressive/secondary progressive". I became inured to the characterizations or rubrics of Multiple Sclerosis. I had what I had and that is what I had - I thought.  Now as 2019 turns its firsr pages I have come to realize something. Firstly, before 2000 many Neurologists did not believe that PAIN was a symptom of MS!! I still do not understand how one can have demylenation of the insulation around nerves and not feel the pain that insulation is meant to protect us from. Needless to say, that is not an 'au currant' medical belief. Pain is very much a symptom and it is essential that it is dealt with in treating MS, no  different from vertigo or balance issues, muscle spasticity, restless legs, neuralgic frissons in which ever side of the body is primarily affected, double vision, lancing pains, and diabetic like symptoms whether one is diabetic, pre-diabetic or not at all. MS is never a pain in the butt - leave that to the urologists and other specialists of colon, kidneys, prostrate and liver which often will complicate the reading of symptoms once they appear - AND, as one ages, THEY DO APPEAR.

So the point of this ramble is PAIN. I find that when in pain most of my other symptoms are exacerbated. Ipso facto, if pain is eliminated, I ask - is one in remission? Can one be thought of as in remission?

Example, to the point: I have taken morphine in the form of Hydromorph-contin for more than four years. When I take it in high doses I am not only free of pain, but ALSO, as Lulu said: "I feel good...the veil has lifted...I feel like my body is all connected. However, consistent use does also have its consequences such as affecting my sleep.

With much pain, I use a roll-aider and cane indoors and out. I have to. I will lose my balance. I will stumble. I was a semi-pro bike racer (bicycle not motor) and now I cannot maintian my balance! When not in as much pain -not to say that I can climb back into the saddle- I feel confident enough to ride again. Instead of walking with the roll-aider in my home, I walk with arms outstretched to the walls. Finally, as the medication wears down at night, I get worse. The stairs I used two hours earlier going down, I can no longer go up without a struggle.

My neurologisty and GP wants me to wean off the opiates; I ask them and myself: why? I have attempted it and I get the same results. I am on a standard dose of Gabapentin and it is NOT a substitute. It does help neuralgia which by definition is an enigma of itself as the causes can be many.

My point is for other others to comment on: Do you believe that the relief of MS pain consititutes a 'remission' in your MS?

Graeme W
2 Responses
987762 tn?1331027953
COMMUNITY LEADER
Hi Graeme and welcome,

Interesting thought but what Lulu was talking about was the remitting part of Relapsing Remitting MS and for her the knowing of when a relapse has ended with her again feeling good....

Q: "Do you believe that the relief of MS pain consititutes a 'remission' in your MS?"

A: It would have to be no, because symptom relief controlled by medication isn't referring to the term 'remission' when it comes to conditions like RRMS and keep in mind whilst a medication might make you feel better, function better etc symptom medications are only temporarily masking-hiding-reducing-resolving specific symptoms, the pain symptoms still actually exist when you take the medication away, so pain symptom relief controlled by medication can't cause a true remission in your MS when the pain symptoms always return without it.

You mentioned that "My neurologisty and GP wants me to wean off the opiates; I ask them and myself: why?" the why of it is to do with all the serious health problems that opiates are now known to cause with long term use, on top of high rates of addiction and drug tolerance issues. Basically the more opiates you take over the long term the less they work, because with opiates the brain adapts to what ever dosage you take and over time for you to get the same level of pain relief your opiate dosage will typically need to keep increasing and increasing...

One of the biggest issues with opiates taken for too long is that opiates will eventually cause permanent damage not only to the brain but to the central nervous system and autonomic nervous system which regulates bodily functions, and long term opiate use is also known to alter  psychological functioning......all told, long term opiate use has not turned out to be a proven permanent solution for pain management but a common cause of even more medical issues than what the patient started out with before taking the opiates, which has dr's world wide trying to get patients off opiates and on to alternative treatments before-during-after any of the known issues happen.

I'd recommend you seriously consider thinking beyond the short term pain relief that taking opiates is providing you today and try thinking of your tomorrows and the benefits you'd get in proactively finding a long term pain solution before the opiates stop working, and also minimising the opiate caused medical problems potential from being your future, seriously think about your tomorrows.....

Hope that helps........JJ
1 Comments
That helps a lot. I appreciate your input and it has  caused a reframing of the issue. I am left though with a perplexing issue of age. As said, I am 75 and have lived with M s for many years. I live for that 'relief' feeling of remission - the feeling Lulu described. As it appears my M S has progressed, I may feel the relief of 'remission' now, only thru opiates. At my age, it is all about quality of life. I would stop pain killers in a heart beat if I could find a non medication relief. From therapy to massage, acupuncture, relaxation techniques and courses, sleep therapy, exercise - I am left with chronic pain, exacerbated by almost any stress and then the pain drains me of energy and I am overcome by fatigue. I do thank you for your response.
987762 tn?1331027953
COMMUNITY LEADER
Keep in mind that with the progressive types of MS,  symptoms develop slowly over time, plateau and or continue to worsen, the progressive types don't generally experience symptom recovery, improvements or remission in the same ways that RRMS does.

I'm more inclined to say beyond early stage RRMS, remission is not the reality of returning-recovering-remitting back to before your first MS relapse 'normal' as such, it's more about returning-recovering-remitting to what your last individual version of normal is or is going to be.

A new relapses is basically the return of previously experienced symptoms 'and or' worsening of existing no longer fully remitting symptoms 'and or' experiencing a completely new symptom, for a time period of no less than 24-48 hours and no sooner than 30 days after your last relapse ended.....No matter your age, over the years MS forces you to continually adjust to a new version of what is normal for you, the perspective of being in remission is as equally unique to the individual as the combination of symptoms and severity is unique...

With that thought in mind, lulu's version of remission is likely unobtainable for anybody else on the planet.....your own version of 'normal' is everyday being in chronic pain, but calling the feeling your aiming for 'remission' though may be confusing for other pwMS, when what you more likely mean by 'remission' is that your chronic pain is predominantly controlled thru opiates and it's the daily pain relief that provides you with a level of feeling good and closest to your normal than you otherwise would have.    

I totally understand your focusing on quality of life, not sure anybody would even be suggesting there are non medication related pain relief options available for your pain situation, just that there are other pain med options that don't have the same types of long term issues that opiates are known for....

eg: Gabapentin is a common drug used in the treatment of neuropathic pain in MS, prescribed for pain caused directly by MS ie trigeminal neuralgia, dysaesthesia, burning or pins and needles, spasticity etc etc but it's not necessarily the right treatment option for everyone so all the potential alternatives need to be considered  depending on the specific needs of the patient eg botox, balcofen pill form or ITB etc It's not uncommon for a team of dr's to be involved in finding what treatment works best for you, eg pain specialist, physio therapists, neuro, psychologist etc but the main point of changing medications is to improve your long term quality of life!

It's not ever a walk in the park, but those i've talked to about seeing a pain specialist haven't mentioned regretting finding a better pain solution than what they had, honestly some may never find it but i've always thought it would be worth at least talking with a pain specialist to see what, if any alternative pain options you have available so you can make a more informed decision on whats right for you.

Hope that helps......JJ      
1 Comments
Again thank you. Your comments support a recent decision we have made to book me into the pain management clinic in a major city hospital which,mI will be able to access. In the meantime I don't feel that I am burdened by opiates, but blessed. I do love the 'normal' which it brings me.
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