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Veteran Member

Date Joined Jun 2005
Total Posts : 2135
   Posted 2/13/2008 9:45 AM (GMT -6)   
Kiera asked about pain in another thread.  Rather than letting this get lost in the thread, I'm making a new post.
I'm quoting below from the book, "Multiple Sclerosis: The Questions You Have, The Answers You Need", edited by Rosalind C. Kalb, Ph.D.
I have the second edition; I think a third edition is available now.  It's also in many libraries, as the publisher donated thousands of copies to libraries in the US. The book is set up as if someone asked the question, and then it's answered:
"What types of pain can be caused by MS?  What are the best treatments for the different bypes of pain?"
Pain in MS can take different forms. The most common is called dysesthesia, referring to a burning sensation caused by abnormalities in the sensory pathways in the brain and spinal cord. Demyelination in the sensory pathways can result in pain, numbness, tingling, itching, or other abnormal sensations.  Sometimes the pain is quite severe or sharp, most commonly in the trigeminal nerve of the face.  Trigeminal neuraligia is often described as a stabbing or shock-like pain along the side of the face.   These types of pain do not respond to ordinary pain medications.  The preferred treatment is to try to alter the faulty nerve conduction with other types of medications, including antiepileptic drugs such as Neurontin, Tegretol, Dilantin, and Depakene.  Antidepressant medications such as Elavil may also relieve the pain.  Some people find that acupuncture and meditation oare effective for dysesthesias.
A second, relatively common type of pain or discomfort in MS results from the symptoms of spasticity -- increased muscle tone and muscle spasms can be quite uncomfortable.  Antispasticity medications are the most effective treatment for this type of discomfort.
In addition to these more common types of pain in MS, secondary orthopedic pain can result from changes in a person's posture or gait.  If a person begins to walk or stand differently because of weakness or spasticity, for example, these changes can in turn cause pain in the knees, back, or hips.  It is important to identify the causes of this type of secondary pain so that an appropriate treatment regimen of physical therapy, gait training, seating assessment (for someone in a wheelchair), exercise, and pain relief can be implemented."
...I am not a doctor, nor health professional, and don't pretend to be one, here.....

Regular Member

Date Joined Apr 2007
Total Posts : 164
   Posted 2/13/2008 12:38 PM (GMT -6)   
Have you ever seen in your readings that other than the burning, itching pain that you stated, which I definately have, that a person with MS can also break out in hives. 
I ask because that is what happened when I first got sick 20 years ago.  The docs all thought allergy because it started as hives with the Xmas tree, but then by the beginning of February I looked like the elephant man, covered in welts, swollen everywhere, itch so bad it burns.  They did skin biopsies, allergy testing three times, blook work and could find no reason for the hives.
Well, the hives are back, and what caught me in your post is the burning, itching I get with them.  Also when I get up in the morning my legs turn a lovely shade of lavendar, like a circulation issue.  I see my neuro Monday, and she has never seen these hives on my, so I am suffering until my appt to show her.  I know she'll probably say not neuro, see an allergist, but you seem to have read everything, do you have thoughts or suggestions for me to share with the neuro or research?
Thanks for always guiding us to the right answers.

Veteran Member

Date Joined Jun 2005
Total Posts : 2135
   Posted 2/13/2008 3:39 PM (GMT -6)   
I've never seen anything in MS literature that I've reviewed that has "hives" as a symptom of MS, or related to anyone having MS, or being diagnosed with MS. I really think an allergist is in order...and a careful study of your environment... I'm really sorry. I've only had hives once, and that was directly connected to a change in medications. I hope you can get to the bottom of that issue. They're really uncomfortable, if not downright painful!
...I am not a doctor, nor health professional, and don't pretend to be one, here.....

Regular Member

Date Joined Mar 2007
Total Posts : 260
   Posted 2/13/2008 7:27 PM (GMT -6)   
Awww Debbie,
I've only had hives once. We figured out it was caused by Neurontin. I had welts all over and so, so itchy. It was terrible. I was so upset b/c it was really helping me. I hope you find out whats causing it. It is miserable, i know.
Feel better Soon!
Dx Dec 06, Rebif, 44 mcgs 3 x wk, Baclofen, Cymbalta

Regular Member

Date Joined Dec 2007
Total Posts : 364
   Posted 2/14/2008 7:17 AM (GMT -6)   
After id made my last post yesterday.

My gp called back and said she'd see me to talk all of this over today (dont think i can cuz snow and i do NOT wish to tell her just how bad it is in front of my little boy), not to mention the roads and already possible danger of driving.
Neuro would like to discuss it monday. Hopefully i can get one of them to adjust their date to Fri , when hubby is off work.
Anyway my pain got up to about a 9, i mean i just balled (sort of) in a reclciner and held on...naseau, that ON in the left eye.....intense spinal type pain, skin burning to where i couldnt distinguish temp in house and they said it was cold...i had to go outside for a second...came back in and just thought i cant hold on...and a slow lift up of symtpoms. I cant say what even lifted first...but i have seen other times like that where it will peak really hard or first half of day will be tons better than latter half or vice versa as in last night.

Oh....before the relief i did take the oxy. (the instant relief for breakthrough) which is lower dose. I really wanted to go without it but i felt desperate and couldnt keeep the way i was (was thinking ambulance, as i hate to drain hubby)..and then the relief came. But sometimes it does seem to lessen or swing in degree of pain that only it commands....some mornings feeling like the day will have alot of symptoms but yanno you can function..then it whams you.

I read all the posts to my hubby (ive never done that) was like he had a new look to his face . I think i am very hesitant on pain meds because he also will refer to the fact that he wont take a drug and is not trusting a doctor and how he will just manage his. For a long time.......he'd complain with almost anything i had and it got where id be so worried he had this too, only to glance at him hopping outside and all over the yard (with no stress or pain no his face when i wasnt looking) that i finally asked. Are you really having "this" much pain or? He finally said, No kiera im not.
I never said i was (um), and so forth. I guess i felt if he could put up with his aches and moans, he has no dx that i should be able to my own. Also hearing him preach about drug abusers.....

Id like to thank all here to who helped me. I did find my pain lowered to a 2 yesterday with neurontin but ended up all stressful when hubby came in and appt were trying to be made that i ended up just vomitting.......and then the bad hit.
Then when i could tolerate it i took the med for pain..well a very small percentage of it.

My little boy is intelligent. I try never to say other than what he will obviously see for himself. Such as if he see's my thumb buckle ill say isnt that odd how my thumb gives out...and ill see him playing with his lol. He sees the tears though, part of them are for him , he just doesnt know that. The other night hubby was asked by him to make an ice cream float and i was not feeling cognitively hooked to trust myself with the blades of the procesessor he uses but would have for sons sake. I told my son, honey mommy would make it for you. You can always ask me. He leaned over and whispered "mommy, i know daddy's back hurts and all, but he doesnt have a disease like you do ok?" <<like he was cluing me in lol. So i really do not want his little shoulders to carry too much and to be frank about the pain with doctor today i know would put a huge amount of worry on him.

Dysesthia was kind of all over, like i put earlier to the point that i couldnt tell the temp of the room anymore, with On, nasuea , vomitting, aching sides and oops had a bladder infection also. Luckily i had some antibiotics and began those.

If Dysesthia as far as burning is the only symptom then i dont feel a need to medicate no matter how hot or burned i feel, but its when all the different symptoms gather themsleves at once that can take your breath. At that time in space you cannot seem to find relief. I'd put it on a painscale of about 9 with childbirth being the highest ive felt.

Keep in mind that spinal changes do suggest i have severe root nerve problems so my spine is a mess anyway so alot of pain im sure comes from all day of compensation and thats why it can peak so heavily at prime times even when i havent overdone it. With the bladder infection as a side note it can make things a bit swimmy for sure.

This morning i feel the burning in hands with numbness in left fingers and ache in right foot/ with burning also but....all over so far so good..this is how yesterday began. The numbness in fingers staying...not changing with movement and im typing with it so it left me that present i suppose. Alot of shoulder area pain and this is good!!! in comparison, very very good.

I hope all can be honest about what they feel. I hesitated. After i did open up and Ms. uppity shared and as she pointed out she doesn't dwell on those things nor speak of them if not needed, sometimes i think we do have to ask.
This is a support board also not complaner's site, but i found out by being honest with all here that i wasn't judged and wasn't minimized at all, and truly Ms .Uppity i know youve had your share. Your first attacks alone describe only a portion of my first esepade and some of my worst times. Yet i didnt get left the amount of disability when it was through.

Everyone experiences so many things that in my own opinion (this is important that you see its merely an opinion) that the neuralgia ive had in my face..felt mild . Oh i mean it hurt when it lightening bolted me ok? I dont mean to say it did not. But the brevity of it is the redeeming thing that helped.

Just your toes ms. uppity ...a constant feelng of them being drawn (dont remember your word) without visually seeing it would bother alot of people alot more than it does you)---you have ajusted well. Youve seen such times that the enternig into the side effects of interfurons was ok compared to what you had felt. Anything to ease it up. I am thankful it did happen in your lifetime! and mine!

I rambling here and trying to say two major things
1. please feel free to be honest about what your going through as you can better be supported if we really know. I tried to hide too much and it was truthfully too much. I have changed my thinking on the basis of Needed Pain Medicine and it is Obvious.
2. I have alot of severe spinal things that some of you may or may not have. When my body is injected with cortsoids, the 3rd shot being the charm and some of that beng laid to the side, then the other symptoms were manageable and even though not pretty, i could find my place and space and what to do with each. I do think its time for injections as my spine says so. You may not experience the pain i have , as your root nerve may never be like mine ( i say this to encourage others that just because im chronic/severe pain) does not say that you will be. As far as the spine goes, it varies as is determined by a host of things.

thanks to all of you and Sweet, i hope your neuro does look at the hives. Even though I agree with Ms. Uppity that I do not think that is of the MS world. Ms people most certainly can have more than 1 thing going on!
You obviously do have a second issue and i hope and pray that you find relief from this very very soon. I cant imagine having them for as long as you've endured them. The neuro can at least help you to undertand what might be your best approach or know of someone they think is a good allergist for this.


Every day brings us closer to what we reach for all things.

Veteran Member

Date Joined Jun 2005
Total Posts : 2135
   Posted 2/14/2008 7:45 AM (GMT -6)   

Dear Kiera, I'm so very sorry you have so much to deal with.  You are quite right..many of us don't have the added problem of spinal issues, on top of what is going on with MS.

There is one thing I've learned about chronic pain, and the meds usually prescribed for that: it's important to take them before the pain becomes a "9" (or worse)...they're more effective and you are much more comfortable if you take them when the pain begins to worsen, when the flareup starts...not when it is so very severe.

I did say that people experience pain differently, and what one person can "deal with" is extremely painful for someone else. You shouldn't judge yourself and your pain by what your husband describes as his....without being in his body (or he in yours) there is no way to be sure that you are both describing the same sort of pain. So whether he takes or doesn't take pain medication should have no influence on what you do to manage your situation!

As for your child...I don't know how old he is.  But you might want to go to the National MS site, and look around. There are links there to publications they can send you (for free) for ways to talk about your child about you having MS, materials written simply so they can understand.  As you well know, children are very perceptive, and very often know much more than you think they know.  And unfortunately children (and this is a developmental thing, not any sort of flaw!) think of themselves as the "center of their universe"...and so if something is "wrong" with Mommy or Daddy, it's THEIR fault, they are somehow to blame...

and since you and I shared our negative childhood experiences, I know you don't want your rugrat to grow up feeling that!!

Anyway, I do hope you can get with one or the other of your doctors and get all this stuff sorted out, and get on a regimen that really will help you.  Take care.


...I am not a doctor, nor health professional, and don't pretend to be one, here.....

Regular Member

Date Joined Dec 2007
Total Posts : 364
   Posted 2/14/2008 9:30 AM (GMT -6)   
Well if id of read this i wouldnt of had to type all i did on the other page, lol, sorry but my situation got the best of me and i spilled a whole lot on you on the other thread.

Amazing, I thank you immensely for this about the child. I worried msyelf sick about how not to make this his fault and i do agree children personalize everything.

I so want him to be ok. At the beginning they told me children that are young when this happens grow up with the parent having it so not always to they see it as abnormal. they've known nothing else. My son however was about hmm, 7 when this happened and bless his heart. Such a caring little boy. I really do try to make sure he knows that i feel he is a blessing and not a burden. That if i could id play all day in a foxhole with him. I have rode bicycles down the road with him (maybe not that safely for me at the time but his face was worth it)...

So we try.

Your right. I need to stop comparing myself to anyone really. Especially my hubby because he is very very judgemental of everyones pain. Other than his mom.

Id never seen a link about the children so this is awesome!

Thanks for the reminder. I am going to take a neurontin as soon as i type this as things are picking up and your right , waiting til im a 9 didn't help a thing.

thanks so much and your right, my rugrat matters more than the whole universe to me!...oh! Im also looking at trying to get a pomeranian puppy. Or , if i cant find one id like a lil Kitten. My hubby told me last night (broke the news) he's been looking all over pet places for valentines.

So ..hopefully the lil furfriend will be my friend and be helpful for my son too!!!!!!!! :)


Every day brings us closer to what we reach for all things.

mamana monster
Veteran Member

Date Joined May 2004
Total Posts : 2236
   Posted 2/15/2008 9:18 PM (GMT -6)   
I'm not the greatest at expressing my feelings, pain, symptoms, etc., esp. to my hubby, (he has a tendency to be overly sympathtic, I don't need that) but I do find it very comforting to be able to come n HW and find compassion, knowledge and support, this is something all of us need, without doubt or question...

I was dx'd with UC when my only child (son) was in his junior year of high school, it was difficult at best, in and out of the hospital, on meds that had horrid side effects, dr's appts. as so forth, not too mention the symptoms of the disease itself. I was always very active ande involved in his life so when that came to a halt, it was challenging for all of us to say the least. You do not ever want your children to suffer through your trials and tribulations ever, unfortunately, sometimes they must share the experience.

There are so many things that we must endure with chronic diseases that we don't want to share with anyone, we always want to have the broad shoulders, we are the survivors...

Thanks for sharing your feelings, even to the newbies, specifically me, you are all encouraging, compassionate and very much needed.

Be well,



"Be yourself. An original is always worth more than a copy."


Dx'd with Ulcerative Colitis (pancolitis) 2004 in meds!

 2008...Multiple Sclerosis...Avonex once weekly



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