Medications

[cheermom47]

Does anyone take anything for nerve pain? I am trying not to because the side effects they all list freak me out, but I am going to have to do something soon. I see my neuro again next month and was planning on talking to him about it then.
I am also considering scaling back a bit on working full time (currently at least 45 hours per week) to see if it helps with the fatigue. Since I am in a salaried position, I am not sure how my employer would handle it. Has anyone dealt with this or have any suggestions?

thanks!
CM *kitty

[powder pig russ]

Cheermom

I have found the dearth of responses to you question a bit surprising. Have you? This indicates several possible scenarios:
1. Pain is not an issue for most MMN patients;
2. No one is taking anything for pain; or
3. No one's talking about their particular treatment strategies.

I'm inclined to think it's #1. Another possibility may be that we may experience pain but not recognize it as such. It took me a while to figure this one out. I realized that much of the fatigue I encountered stemmed from "overdoing it." In many, excess pain causes fatigue. It wears you out. As I've mentioned before, as soon as I learned to better budget my daily energy output, I became much better at keeping pace with my life's goals (family, work, travel, etc.).

That said, I've wanted for a long time to share another effective tool I use for pain mitigation: Epsom salt rubs/baths. Fortunately, no trip to the Dr. is needed. It's not a prescription or a proscription. It's merely a recipe. "Salt to taste" is a fine way to make it suit you.

I take a plastic cup (6 oz. approx) into the shower/bath filled with Epsom salts. I repeatedly pour 1-2 tablespoons into my hand and then wipe/rub the ensuing slush over my skin in the pained/tired areas. Recently, I've begun to pour it into a washcloth which is nice too. And periodically if I need to make it extra soothing, I'll mix in some lavender or other dried blossoms into the mix which infuses the senses with wonderful aromas bound to change your perspective on the topic that brought us here.

Enjoy. Russ

[Peg B]

HI,

Another reason for so few/no responses is I did not see this new post. I look everyday on this site and if there is something I have not read it is in bold print. Your post just showed as new for me today. Others may have had a symilar issue.

I take Vicodine for pain when I need it. I must say though unless I over do it, I do not have pain either. Last week my bursitis (I think) kicked in. NOTE: I have had it off and on since I was 14 - Yikes that's 45 years ago.:)
So... I got cortizone shots (2 occasions) with hot and cold packs and Ibroprophen, it is better. I only took Vicodine for the pain of the shots. So hot pads - that are just put in the micro wave are great for pain as so is cold.

Mostly I need the Tonic water (quinine) for the night cramps. If I do not get at least 3/4 of a litre I cramp if I move my foot/toe. It took away the restless leg syndrom also. Hope this helps. Sincerely, Peg

[cheermom47]

Russ & Peg,

thank you for your responses, I appreciate your feedback. It is interesting to me that others may not have pain, maybe its because I am no longer using any form of treatment that I have it? I have an appointment with my Neuro on 2/18 and I will talk to him about it then.

Peg - did you get Cortisone shots in your feet? It has been recommended to me, but I am not really all that sure about having it done. I have bursitis, plantar fasciitis and bone spurs in my left foot. I go back to see the podiatrist next monday and I know he's going to want to inject my foot...

thanks!
CM

[Peg B]

Dear CM,

No I did not get cortisone in my feet. It is in my shoulder. The shots hurt but in that kind of a good way that brings relief. I am still having trouble so it may not be bursitis, but they said possible torn rotator cup. So none of mine has to do with MMN or ALS anyway. Take care, Peg

[deedee8611]

Hi Cheermom.

Not sure what you mean by pain..When I talk about pain it's from the muscle cramps..I use to take Quinine but they took it off the market..I have been drinking tonic water for several years..My Dr. gave me a script and I know get mt Quinine from Canada..Glad too have them again..

Hope this helps..

Good Luck
DeeDee

[hunky from PA]

No pain? Awww, come on. My husbands feet are constantly burning, his hands cramp to the point he cries out and the pain is evident. He stopped the IVIG as no results were evident but the valium and pain meds help to a point. He took himself off the neurontin and pain meds for a while and got majorly chewed out by his dr. who said if these were helping and available why not.

I still wonder about the diagonosis from all i have read. MMN seems to have so many aspects it is hard for me as the by-stander to say, "hey, this is what i see everyday in Ed who has had this for 12 yrs or so."

Am i totally off the wall here?:)

[Peg B]

Hi,

I am exactly like DeeDee said. If I don't drink at least 3/4 of a litre of Tonic everyday I get terrible night cramps. It also cleared up my restless leg syndrom so I sleep a lot better. Does your husband drinkTonic water? Peg

[cheermom47]

to those that replieed to my e-mail. I plan on addressing this with my neuro when I see him next month. I guess I am going to have to decide what I want to try, even with the side effects, maybe they will be better than the pain I get.

thanks gain, everyone take care!
CM

[powder pig russ]

I think I'll have to try bananas and tonic water again.

A few years back when I felt like I was at the end of my rope in dealing with the chronic pain, I visited one hospital which has a specialized Pain Clinic. I went in there expecting that I would be given a prescription for opiates (which I didn't really want). Instead, the physician gave me a "prescription" to see a physical therapist, Carolyn McManus (http://carolynmcmanus.com/), who does "biofeedback" treatments in the same facility. I went in there, a bit skeptical, thinking I would be listening to waveform sounds and such, and there would be no beneficial result. To my surprise, one hour with Carolyn was worth far more than a shovelful of pills.

In that first session, I came away with the epiphany that, "It's just pain." I was reawakened to meditation techniques I had studied years before. The techniques that Ms. McManus uses are based on the principles of Mindfulness Meditation mentioned elsewhere in this forum in reference to the book Full Catastrophe Living. And while these techniques are very viable and useful throughout the day to hold the influence of pain and in abeyance, it is but one valuable tool in my overall pain management strategy.

Russ

[Peg B]

Dear Russ et al,

Well... At my last Dr. appointment we discussed the fact that I was not much better and a little bit worse (another finger is beginning to curl) after a year of IVIG treatemets. Since the IVIG was also a test to see if I had MMN and not ALS, it looks like I might have "Atypical ALS." (REALLY slow progression - I have had symptoms since 2002) I will get IVIG until April and on April 3 I will have an EMG/NCV and see if objectively I am worse. If so, at that point she, the DR, will take me off of IVIG and declare it ALS. However, she said if I got worse real fast she would put me back on IVIG. The thing is DeeDee and I used to have the same Dr. DeeDee was taken off IVIG and later got worse and went to another clinic. She has told her story here too.

Is this why I don't have pain - I wonder. ALS is typically without pain. Is MMN typically with pain? YIKES!! is all I can think of to say. Take Care, Peg

[Peg B]

Hi,

I hope I did not offend anyone with my last entry. Since there has been no new entries since then I am afraid I might have. There was no intent to do so. But if I did, please accept my apology.

I am wondering what other tests beside EMG/NCV and bloodwork is there to verify MMN. It occurs to me that many of you are not on IVIG, for a variety of reasons but often because it did no good for you. Yet for me it is a "test" and if I don't improve on it, it means ALS. How were others diagnosed with MMN and not "Atypical ALS?" Thanks, Peg

[cheermom47]

Peg,

I am not offended at all. I went to Mayo clinic and had lots of testing, and they found conduction block, but even still IVIg or Cytoxan didnt work for me. I am not taking any meds at all right now for my MMN - theres really nothing left for me to try at this point.

I wish you all the best!
Take Care,
CM

[powder pig russ]

* No offense, Peg. Just nothing new, it seems.
* No pain? No gain! Ha, ha ha. Seriously though, consider yourself lucky in that regard.
* We've seen a few people here get IVIg and still deteriorate. Remove the IVIg and you may experience a different rate of progression or not. I was depressed at first at the prospect of not getting any more IVIg but as time went on I considered myself relieved of being a slave to the needle and its monthly intrusion.
* Since I did Cytoxin I feel "stronger" - not physically but of spirit and vitality.
* I see my neuro in 2 weeks and want to ask about "Atypical ALS." From what I've briefly read, this seems to be a catch-all category for "we can't exactly classify (or treat) what you've got so we'll give you this label till we find a better one."

Thanks for checking in. Russ

[Peg B]

That's very helpful. Thanks, Peg