how do you deal with the pain?

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ebarb
Regular Member


Date Joined Oct 2007
Total Posts : 23
   Posted 4/7/2008 7:24 PM (GMT -7)   
I have horrible nerve pain and it has been even worse these past few days.  How do those of you that have the pain deal with it?  It is the worst in my left arm.  I try to not use my arm at all but it hasnt seemed to help.  It was so hard to work today (im a second grade teacher) I do not even want to go in to work tomorrow!  I just want to lay in bed all day and wave my wand so my house will be clean!
 
 

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 4/7/2008 10:21 PM (GMT -7)   
Hey Friend

Are u taking anything for this?? If not u may want to ask for something like Neurontin. I use it for nerve pain in my legs and it's great! I'm told i don't even take that much at 200mg's per night, but that little bit must be just enuf! Others use klonopin. U may want to investigate these and give ur doc a call. Either way, i'd call the doc and let them know what's happening and that ur inpai. Hang in there friend...this will get better.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 4/8/2008 6:27 AM (GMT -7)   

ooooh Elaina!!

Teaching is such a physical job too!!!  I am so sorry.  I can't help much here.  I don't often deal with pain.  If I do, it is at the end of a busy day that I over did on and I can just rest and take strong meds that knock me out.  I just thought I would add my support.  You are really having a rough go right now.  Hang in there and know that I am thinking of you!!

Love and prayers,


Gretchen       co-moderator MS board       diagnosed with MS July 2006


ebarb
Regular Member


Date Joined Oct 2007
Total Posts : 23
   Posted 4/8/2008 6:28 AM (GMT -7)   

I tried Neurontin when I first started having problems like a year ago but it made me feel like I was drunk all the time.  I couldn't drive and I was having trouble teaching so my doc switched me to Lyrica.  Well I have gained 25 pounds from that so my doc is taking me off of that right now.  A few months ago he started me on Cymbalta for the pain.  And while it helps with the nerve pain I get in my ear and my right arm I feel like it doesnt even touch the pain in my left arm.  I have always had a high pain tolerance, but being in constant pain for the last few weeks with no let up is just too much!

Right after I started the Cymbalta the pain in my left arm went away completely.  I thought I had found a med to work!  Then it came back a few weeks ago.  When I told my doc that last week, he just shook his head and said he needed to see another MRI.  He is not the kind of doctor to say anything unless he is sure.

Now I am off to teach a bunch of 8 year olds for the day! Fun, fun, fun!  I wish I could just sleep all day!  Is it almost summer? =)

 

Elaina


D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 4/8/2008 7:58 PM (GMT -7)   
Hi, I'm kinda curious about this too as I experience nerve pain but I've been using Tylenol #3 and it seems to work well for me, though only when I go to sleep at night as I could not function all day on it, or drive a car. The problem is that codeine gets built up or addictive and I guard against that so I use it only when I'm at the intolerable point but it works well.
 
Hubby actually got a virus in his long thoracic nerve last spring... it was the only thing that touched it.
 
I'm going to talk to my GP tomorrow about Neurontin... have wondered if it would help on a regular basis... keep me from feeling on fire all over.  Somedays I don't even want to be in this body the way it hurts!
 
 
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


ebarb
Regular Member


Date Joined Oct 2007
Total Posts : 23
   Posted 4/8/2008 8:38 PM (GMT -7)   
I wish I could try Tylenol 3 if it would help, but I am allergic to Codeine.  Which is why I can't take any painkillers either!  Other docs have given me painkillers and all they do is knock me out or make me groggy, but they dont touch the pain!
 
My arm is actually feeling a lot better today, still some pain, but this I can live with!  My husband was like well what did you do different today?  I didnt do anything different!
 
Oh the wonderful world of nerves! ha ha ha

nursekatb
Regular Member


Date Joined Apr 2008
Total Posts : 43
   Posted 4/9/2008 7:10 PM (GMT -7)   
Hi Elaina, I too have had L arm pain (and left hand stiffness/pain). I started Neurontin last summer during a flare where the left arm pain was excruiating. It was very hard to do anything. I really feel for you having to be at school working thru the pain. I am a stay at home mom now, so at least I was at home with it, but it was still so hard to lift my little one, cook, most anything. I'm left handed too so it's my dominant side. At first, my dr. only gave me a 30 day supply so I took that to mean that my attack and pain should be over by the end of the prescription, but the month came to an end and pain was not gone. Needless to say I called and they phoned in refills, but I noticed everytime I tried to wean myself off of it that my pain would worsen. Then I went to ms specialist several months later and when I told him how the pain was worsening even on the med and how tired I was, he suggested trying to come off the Neurontin. I did try and did so very slowly (over a week or so) and noticed that at first my pain got worse but after the 5th day I noticed it was getting better and then finally no more pain. I just figured at that point my flare was over and just didn't need it anymore. Definitely hard to know that when you are on it. Anyways, I am back to having some arm pain again with this new flare...seems as if all my old symptoms are taking turns in coming back for a visit with this one. I have a whole bunch of Neurontin left if I need to go there again, but hopefully not. On the plus side, I never slept better than with that medicine. :) Anyways, I hope you continue to have good days. I am sorry you are having so much trouble with finding the right medicine for you. Take care...Kathy

mojo
New Member


Date Joined Mar 2008
Total Posts : 6
   Posted 4/10/2008 4:02 AM (GMT -7)   
neurontin has worked incredibly well for me, it may be worth revisiting this med w/yr doctor and changing dose / dose schedule. to benefit most from this med, it needs to be taken regularly. (originally 400mg @ night - now take 300mg x2/day). i'd also mentioned in a prior post reply that ice packs to neck/wrists really do ease pain for me beyond the meds. breathing techniques (i.e. yoga / self-hypnosis) also help to deal w/painful days.

luckily, i've not had any negative effects from neurontin...the concerns i have about some of the meds mentioned are strictly personal, but seem to be shared by some:

painkillers: they don't really help w/this type of pain, just cause me not to care that i hurt. i do have to take, though, due to bulging/herniated/arthritic discs in neck. i don't take enough to be pain-free - only enough to make it bearable (don't need an addiction on top of the ms).

lyrica: have we all seen the commercials (don't need to have "increased gambling and sexual urges" on top of the ms).

cymbalta: it's my understanding that this is an anti-depressant, and i've already had horrific side-effects with this type of med (and anyway, if i didn't find this disease somewhat depressing, then i'd be crazy on top of the ms).

hope you can work thru this sooner than later.

D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 4/10/2008 5:26 AM (GMT -7)   
LOL Mojo I like your synopsis alot! I've always wondered about the side effects cautions and the cymbalta seems to be a tricky way to get the antidepressant into us when as you said, if we didn't recognize the potential for depression with this disease, we'd be a little crazy too!

Barb Luckily for me I'm good with codeine but I'm allergic to Demerol so that sometimes presents a new set of problems for pain killers in that "family" of drugs which just makes horrendously ill on top of the pain.

Everything is so individual about our nervous systems. That's why I just smile when someone says to me after asking exactly what's going on, and I try to briefly explain a few symptoms, they say... "oh well I get that too!"... I'm so glad for them they really don't!
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 4/10/2008 5:54 AM (GMT -7)   

I am glad that you admitted that these are your "personal concerns" as a disclaimer here.  We have several members here that do take Lyrica, Cymbalta, Neurontin and other drugs that ease the pain and other symptoms of MS.  Cymbalta not only serves as an anti-depressant, it can relieve nerve pain as well.  It is very well known that MS does cause depression for many.  It is not well understood if that is from the MS itself or from the interferons many choose to take as progression therapy. 

Please try to be sensitive to the fact that  everyone manages their MS the best they can and for some that does mean taking medications for both progression and symptom relief. 

Love and prayers,
Gretchen       co-moderator MS board       diagnosed with MS July 2006


mojo
New Member


Date Joined Mar 2008
Total Posts : 6
   Posted 4/10/2008 10:11 AM (GMT -7)   
gretchen...i so don't want to step on anyone's toes, or cause anyone to fear "potential" side-effects...i hope all other readers noted my "strictly personal" disclaimer as well. again, this is just my opinion...and my frustration with regard to meds:

when i had my first attack, i just wanted to take a pill that would stop all the symptoms. now, 12 years later i'm no closer to receiving a cure-all rx than i am to gettting that unicorn i'd asked for on my 9th birthday. doctors can tell us (or neglect to tell us) only what benefits / side-effects may or may not occur with a particular course of treatment. learning what others experience and how they manage their ms is invaluable...what works for each varies, but it gives us a "human" reference point when considering options. i choose doctors who assist me in evaluating symptoms vs side-effects based on my individual medical history to avoid compounding existing or creating new health problems.

the medical profession as a whole, seems to overlook non-pharmaceutical ms management options. because we're terrified of what our bodies are doing to us, we allow it....and that scares me too. out of necessity given my negative experiences w/meds, i've learned some effective alternatives to ease both my ms and non-ms symptoms (i.e. the miracle of ice and the benefit of breathing things again)...and look to others for additional suggestions. sometimes the simplest things help me the most and since disability doesn't pay that well, they're also the most cost effective.

by the way, have been practicing yoga for several years....was great to see an earlier post that others are using it too.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 4/10/2008 5:35 PM (GMT -7)   
Hey mojo,
 
I am glad to see this post.  I was so afraid that I would hurt your feelings on this.  I just know that we have some on here on that use these drugs and for them, they are working.  I just don't want anyone feeling bad/weak/guilty that they are taking meds for symptoms.  We live in a society that looks down on those who treat their pain with meds as weak or as not willing to tough it out.
 
I agree with you on the power of the human body to deal with pain and illness.  I have just started yoga and I love it.  The breathing is amazing for me.  It is such a HUGE stress manager for me.  I know that I will just breathe and not think of all that makes my little pea brain crazy/stressed/depressed and the like.
 
Love and prayers,
Gretchen       co-moderator MS board       diagnosed with MS July 2006


D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 4/11/2008 5:08 AM (GMT -7)   
Hey Gretchen, I appreciate your sensitivity to everyone here... I would ask forgiveness if I offended anyone on my comment about the "tricky way to get us on an antidepressant" but I didn't mean it negatively though rereading it now I see how it could sound that way.
 
I've just fought so hard to keep off of those things while trying to get to the bottom of this and had I taken those and not been keenly aware of my body's problems I'd be worst off now. But 10 yrs ago, my GP then thought Paxil and Ativan were my answer because my brother had died and he felt I was in a depression. Well of course I was depressed but my thyroid had also begun to fail and he refused to accept that even though his own labs showed it consistently several times below or low... finally sent me to an endo who figured out my thyroid quit processing one of the T's... since then I'm on the right med... not an antidepressant. It would have masked way too much.
 
So for anyone who might have been offended, I'm sorry but this is where I'm coming from and I'm sure many can relate. I think its more prevalent with women for drs to try to pass off "depression" as our issue rather than listen to us sincerely that we have real things going wrong inside our bodies.
 
Thanks everyone.
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 4/11/2008 6:25 AM (GMT -7)   
Daw,
 
Thanks for this.  It is really important to be sensitive to one another here.  You are doing just fine.  We have to do with our bodies what we are comfortable with.  We have to remember that even a highly skilled doctor with tons of knowledge and experience can only suggest what we should be doing.  It is up to us to make that final decision as to what we do, think or take. 
 
I am sorry to hear about your brother.  It seems as it was a long time ago that you lost your bro but I am sure you still miss him.  I cannot imagine what it would be like to lose a sibling.  I count on mine for so much. 
 
Love and prayers,
Gretchen       co-moderator MS board       diagnosed with MS July 2006


ddmspatient
New Member


Date Joined Apr 2008
Total Posts : 2
   Posted 4/11/2008 9:03 AM (GMT -7)   
D'Awesome,

I can relate to what you are saying, I too have alot of yuck that the dr.s want to say I'm depressed. so...
Last yr I was diagnosed with MS, my daughter and grand daughter were shot and now my son and I are on the verge of homelessness, my boyfriend thought having ms is gross.
I miss my girls..........

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 4/11/2008 10:33 AM (GMT -7)   
Hey ddmspatient

Ohmygosh! I'm so sorry! I cannot imagine losing anyone so close to me either. My heart goes out to u. Hang on friend. I saw u'r other post...are u switching meds?? If so, what are u going to?? How long have u been diagnosed? I'm so glad u've found this board and hope u'll feel comfortable posting and asking questions as u need to. This is a great site with some really wonderful and knowledgable people who will support u in any way they can. Welcome!
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 4/11/2008 10:35 PM (GMT -7)   

Thanks Gretchen, I agree on the sensitivity... the main key is us listening to ourselves first and foremost. It's just too horribly easy (IMO) to be discounted down to feeling like what we go thru is "silly nothings" because others can't see the symptoms. Sure stress doesn't help the disease but it's not the REASON either.  I have learned to believe my body first and foremost even against the drs and ultimately they usually come around (except the GP I left long ago who wisecracked "you wish it was your thyroid" when I was gaining a pound a week and falling asleep midafternoon! BTW same GP who thought Paxil & Ativan was the answer, yep, I switched).

As for losing my bro, yeah, it's one of the toughest life experiences I ever had to go thru, but his choices put him in a position to die - drugs and alcohol and lotsa money... very sad mess. I'll see him in eternity thank God.

ddms, my prayers to you for your situation. I know you hear me and how hard it is for us to be heard by our drs when our drs can't imagine our lives and the stress at times.  My GP was also my mom's Dr before she died and I was her caregiver 24/7 that year (2003-04) and I was fortunate to have a GP who could see "seasons" of life and know that it would ease up and then help me manage everything else. She's very attuned to me being attuned to my body... drives her nurses nuts when she listens to me and agrees. But it's what I love about her... she hears me. She was the first to suspect and detect the MS, the first to finally say let's get you to the neuro.

I so hope things get better for you soon. When my 2nd hubby left me, a friend gave me an old Bonnie Raitt song line... "if you can stand to leave me, then I can stand to see you go!"... I'd consider that with a boyfriend with an attitude like yours showed. Gross? Puleeze! Sure hoping you find a great guy who'll see the best you thru all this!


Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~

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