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Thread: Another short piece describing someone's MS pain...

  1. #1
    Distinguished Community Member Lazarus's Avatar
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    Default Another short piece describing someone's MS pain...

    Sorry, I did not get the fellow's name and now I cannot find the site I was on....BUT, this is a perfect description for some of us.

    "Burning and stabbing sensations" by ????????
    Perhaps the most agonizing symptom I have is the burning and stabbing sensations. I am thankful not everyone with MS gets these, because it really does feel like a punishment being handed down for some terrible thing Iíve done in my past. Primarily affecting my legs (though occasionally my arms will be hit as well) most of the time, it feels like I am burning from the inside out. Some days itís a mild burn or even just achiness, but many other times itís an intense searing pain. I feel like Iím being burned at the stake at times. It can last from minutes to even a full day. Itís just awful, thereís no word that truly can explain how awful it is. Iíve had my share of pains in my life. Iíve suffered numerous broken bones (including breaking my hand/fingers at least eight times), several bad cuts (at least one right to the bone), torn a hamstring, absorbed some vicious hits in football and hockey, a couple of concussions, torn my meniscus, chipped a bone in my knee, a bad bout of meningitis, a severe burn that resulted in hospital time, and have had some pretty bad falls from MS (one recent one through a glass window). I like to think I have a good pain tolerance, but nothing has really compared to this burning sensation I get now. Itís a level of pain I never imagined existed and I now deal with it on a daily basis.

    In addition to all that, I will also occasionally get a quick, sharp, electrical shock-like pain that comes and goes out of nowhere. Weíll be on the couch watching TV and Iíll yell out because it comes on so unexpectedly. Even if itís just my wife with me, I still feel a tad embarrassed for letting out a yelp like that, but I canít help it because itís so sudden. I will also occasionally experience some sensitivity to my skin, where if you touch me, it hurts.

    Having these pains and sensations day in and day out can have a profound effect on a person. I know itís changed me, even if Iím not entirely sure how. Obviously it can cause some moodiness and even some anger. I often feel like Iím being punished. I never felt that way about MS until I started having really bad pain, so I find myself wondering what I did, even though I know thatís not logical. Consistent pain can really mess with your head. At times, itís hard to think clearly (add to that MS Cog Fog and as a former engineer, I feel pretty useless). There are many moments when I just sort of ďcheck outĒ on whatever is going on around me. Iíll be in a daze because my mind is consumed with trying to understand and deal with the sensations my body is experiencing. All of it is made even worse because itís invisible to everyone else. You end up living with this fear of skepticism, this concern that your friends, family, and even doctors may not believe you. If they canít see it and they havenít experienced it, they will never truly understand. Thatís a tough thing to deal with and probably why I have such a connection to others I meet who also have MS.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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    Distinguished Community Member Frog42's Avatar
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    Same way it is with mine. Symptoms change often.

    People seem to think I must be nuts when I feel a sudden sharp pain that goes away quickly. They just don't get it.
    Last edited by Frog42; 10-27-2017 at 11:53 AM.


    Whatever happens around you, don't take it personally. Nothing other people do is because of you. It is because of themselves. -- Miguel Ruiz

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    Distinguished Community Member Lazarus's Avatar
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    Quote Originally Posted by Frog42 View Post
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    Same way it is with mine. Symptoms change often.

    People seem to think I must be nuts when I feel a sudden sharp pain that goes away quickly. They just don't get it.

    I can see why they don't get it. It is so sudden. Comes and goes. In a blink. So intense. But so private...it does not even last long enough for us to wince. (Ok. Not quite. I wince.)
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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    Distinguished Community Member BBS1951's Avatar
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    Word! Am sure I wouldn’t get it either if I was healthy.

    Wish that guy could try MMJ. Might help him. He has had huge number of injuries. Including concussions...Did you see the current research that shows that concussions in teens and adults can raise risk of getting MS?

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    I have the sudden searing pains that come all of a sudden - usually in feet and legs. I also have burning at times, so severe I can hardly bear it on the bottom of my feet. I don't bother to tell anyone because they probably would not believe me. I can well relate to this guy and what he is saying.
    Virginia

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    Distinguished Community Member agate's Avatar
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    Quote Originally Posted by BBS1951 View Post
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    Word! Am sure I wouldnít get it either if I was healthy.

    Wish that guy could try MMJ. Might help him. He has had huge number of injuries. Including concussions...Did you see the current research that shows that concussions in teens and adults can raise risk of getting MS?
    Adults weren't included in this study but this may be the research you're referring to:


    SUMMARY AND COMMENT | NEUROLOGY, PEDIATRICS AND ADOLESCENT MEDICINE

    October 17, 2017
    Is Concussion During Adolescence a Risk Factor for Multiple Sclerosis?
    Jaime Toro, MD reviewing Montgomery S et al. Ann Neurol 2017 Sep 25.
    Yes, among adolescents but not younger children, according to a large population-based study in Sweden.

    Although its etiology is still poorly understood, multiple sclerosis (MS) is a multifactorial disease that results from the interaction between genetic and environmental factors. Whether physical trauma could play a role in the etiology of this disease has been debated. Some scientists argue that physical trauma involving the spinal cord and/or the brain could cause disruption of the blood-brain barrier, causing development of MS plaques in individuals genetically at risk.
    To examine whether concussion in childhood or adolescence is associated with risk for MS, researchers identified approximately 7300 patients with MS using Swedish national registers of prospectively recorded MS diagnoses between 1964 and 2012. Each patient with MS was matched with 10 patients without MS by sex, year of birth, age and vital status at diagnosis, and region of residence (approximately 73,000 controls). Concussion incidence during childhood (birth to age 10 years) and adolescence (ages 11Ė20 years) was compared between cases and controls.
    Using multivariate modeling, concussion diagnosis during adolescence, but not childhood, was significantly associated with risk for MS (adjusted odds ratio, 1.2). A dose-response relationship between number of concussions and MS risk was observed among adolescents (AOR for ≥2 concussions, 2.3). A control diagnosis of broken limb trauma was not associated with MS risk in either age group.
    COMMENT

    This is one of the largest studies reported to date in which a significant association was shown between concussion in adolescence and risk for MS. To guide our counseling of patients and families, further studies are needed to clarify and explore the mechanisms that account for these findings.
    EDITOR DISCLOSURES AT TIME OF PUBLICATION
    Disclosures for Jaime Toro, MD at time of publication
    Editorial boards Multiple Sclerosis and Related Disorders
    CITATION(S):
    Montgomery S et al. Concussion in adolescence and risk of multiple sclerosis. Ann Neurol 2017 Sep 25; [
    From NEJM Journal Watch, October 17, 2017.

    I took a special interest in this because I had two head injuries during adolescence.

    Anyone else have head injuries between the ages of 11 and 20?
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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    Distinguished Community Member Jeanie Z's Avatar
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    Smile

    :) I had three trips to the ER for stitches on my eyebrows about 6 years old. I ran into a door edge hurrying to the bathroom. Another a kid threw a rock at me because I had stolen his horse (a bamboo pole). The third I slid across the ice after the ice capades and hit my eyebrow on the edge of the ice.

    My father told the nurse at the ER we needed a season pass. Two on my left eyebrow and one on the right. My brows are thinner because hair does not grow in the scars. I do not know if I had concussions with those. My family nickname for me was BB for Blunderbust. Jeanie :)

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    I had bad head injury when I was 26. I have often wondered about the correlation and if there is one. I was in a car accident in Europe. I was banged up all over my head real bad (and neck). I was knocked unconscious. I had a big knot on the right temporal region and knots all over my head. I am sure I would have had to have a concussion, but they never checked for it. I was taken to the nearest little place where they just had a skeleton crew of Doctors and then I was sent home. I rested and slept that afternoon and got up and went to work the next day. Getting up and going to work was, as it turns out, the worse thing I could have done.
    Virginia

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    Distinguished Community Member Sherman Peabody's Avatar
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    I've got epilepsy & frequent relapsing MS, what are my options for pain?

    -amyray63

    I've been diagnosed with Epilepsy (20 yrs ago). One of my Seizures was violent enuff to displace my spinal cord at C4-C5, so I was forced to have surgery. I wasn't informed that I would need a Titanium Plate, nor did I know that the surgeon secured it & screwed thru C6. 16 months ago I was diagnosed w/Multiple Sclerosis (Frequent Relapsing). Nerve damage & 18 New Brain Lesions is causing a lot of pain. What Medicine will control my pain w/out nausea.

    ---

    ^^^
    I have had MS since 1974. Most of the pain from mine is from muscle spasms. I anciently found out that low dose ketamine worked for me, you may get different results. When I did six 45-minute infusion of ketamine of 21 days for depression. I was prescribed 100 mg of ketamine in nasal spray up to 3 times a day for the muscle spasm and to maintain the remission of depression. The nasal spray stops all pain for a half hour or so and it come back over a couple of hours but the muscle spasm may be gone for 2 days.

    How ketamine might work for you would depend on what causes your pain. If it's muscle pulling a nerve against a bone you might get a lot of relief. If its something else it may last 30 minutes. Ketamine does make opiates more effective at lower doses, you might get some help there as well.

    Opiates are the other route. They don't work well on muscle spasms. They do work well on nerve pain.

    -OklahomaRed

    https://www.drugs.com/answers/epilep...s-3308302.html

    -----

    Kratom for chronic pain relief

    The DEA has threatened to make kratom a schedule 1 drug, but has put that move on hold due to public outcry and until further studies have been done. Currently it can still be purchased in 45 states that I know of. This may be something you might want to look into, if you haven't already.

    From what I've seen kratom affects people differently. I have had tremendous relief from kratom. I can still use doctor-prescribed opioids at night only for pain, but use kratom during the day. This has kept me from becoming addicted again. There are many testimonies of folks who have been able to withdraw successfully using Kratom.

    http://www.wakingtimes.com/2017/06/0...oid-addiction/

    -----

    I had a 3 day infusion of Ketamine at the beginning of June. I had mine subcutaneously into my stomach rather than IV but otherwise it sounds like the same treatment.

    Ketamine works by resetting the pain receptors in the brain and it is also a very effective analgesic so you get immediate pain relief. It is an hallucinogenic as well though so don't be surprised if things get a bit weird and whacky while you are on the drip. It was quite an Alice in Wonderland 3 days for me but although I was definitely hallucinating I knew all the time it was due to the ketamine. I experienced things like having the hospital room turn into an ŗ la carte restaurant and the drip stand turning into a palm tree etc. Odd but not terrifying.

    It can give up to 2 years of pain relief after the infusion has finished and the pain receptors have reset. I have been amazed at the reduction in my pain. From being in constant mind-boggling agony to almost no pain at all has been bliss. If it is being offered to you, I would grab the chance. Not many people are fortunate enough to have a specialist who is familiar with this treatment so if your doctor feels you would benefit and is able to do it, go for it. It doesn't work for everyone but the odds are definitely in your favour.

    https://community.mssociety.org.uk/f...atment-ms-pain

    -----

    I have ketamine infusion every 6 weeks. I live in the US. It has changed my life! My pain went from 10 every day to a 3!

    Twisterjen

    https://community.mssociety.org.uk/f...atment-ms-pain

    -----

    Kratom for chronic pain relief

    The DEA has threatened to make kratom a schedule 1 drug, but has put that move on hold due to public outcry and until further studies have been done. Currently it can still be purchased in 45 states that I know of. This may be something you might want to look into, if you haven't already.

    From what I've seen kratom affects people differently. I have had tremendous relief from kratom. I can still use doctor-prescribed opioids at night only for pain, but use kratom during the day. This has kept me from becoming addicted again. There are many testimonies of folks who have been able to withdraw successfully using Kratom.

    http://www.wakingtimes.com/2017/06/0...oid-addiction/
    Last edited by Sherman Peabody; 11-12-2017 at 01:16 PM.

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