Where the myth that MS does not cause pain came from I have no clue.
MSers suffer from muscle spasticity, back pain, burning, tingling, girdling (MS Hug), optic neuritis (pain behind the eye), electric shock sensations, trigeminal neuralgia (stabbing feeling in the face) and a host of other ailments. I am sure other posters can help write a book on it from their experiences.
You are not alone and none should continue suffering. There are medications that can help. If the pain is chronic, medications will not "take" the pain away but take the edge off it. Please don't let the medical profession tell you that there is no pain with MS. We know better.
I hope you are receiving good medical care. Make that phone call and speak up. I do believe many neuro's are hard of hearing.
Here is why Neurologists used to believe MS was not a disease of pain or mood impairment. Neurologists only believe in what they have physical evidence of. It was thought especially when MRIs came out that most MS damage was in the white matter of the brain. Then researchers found most of the damage is in the gray matter which does not show up on MRIs. This is why someone can have a clean MRI and have MS.
Even if you are not diagnosed with MS your GP can figure out the cause of pain and try some different options. I take a variety of anti seizure medications (I don't have seizures) to help block nerve pain. Each person has to work with a doctor for a formula that works.
Cost, ability to function, drive, interactions with other medications, side effects and possible addictions have all been things I have had to way with medications.
I also use Yoga, exercise, and hypnosis to help with pain. Losing 30 pounds has helped me with pain and keeping active. If I sit around a couple of days my pain level goes up.
MS in my mind is pain. I realize there are some with MS who do not experience pain. But, myself and many other are not in that class.
The fact that states which allow medical marijauna include MS as one of those medical conditions qualifying for pain relief shows that the educated community realizes that MS does indeed cause severe and debilitating pain.
I would hope that the article you read mentioned both the need and means to educate "people on the outside" to gain a better understanding of MS and how it impacts the lives of those afflicted with this disease.
I'm sorry that you have to wait for a "really bad" episode to "pinpoint the problem. I fail to see the logic in this line of thinking. Can you imagine doing this to someone with heart disease; yeah let's wait for a really bad heart attack, which hopefully won't kill you, and then we'll treat you.
Audrey, I loved your reply! Especially the heart attack angle, I plan on using that one!!!!!
You made me smile! Thank you. Someone on the forum gave me the name of a neuro about 8 hrs away from me and am saving up to drive down there. Pray he takes medicare! After listening to you guys, I am going to start demanding pain medication of some sort. I am tired of lying on the couch with back pain, tingling, electrical shocks and no dx.
Colorado is one of the states with Medical Marijuana (MMJ). The use of MMJ with MS is typically for spasticity. The ability of MMJ to manage spasticity has been documented in controlled studies done at UCSF. It works, but Flexeril works better (at least for me.)
My experience has been that I have neuropathic pain in my lower legs and left arm, TN and headaches. The TN is well managed with Tegretol. The headaches are something that I really have not had before, They started about 8 months ago and I guess you could say they are "ice pick" headaches.
Can you describe your lower leg pain? I am trying to explain mine to the docs and just don't get anywhere... Mine feels like someone is squeezing the backs of my legs, not the front, or blowing them up like an over inflated balloon, just the backs, lidoderm patches help but expensive! I have a few left from when I had a prescription....
today I can't stay out of the bathroom, happens about every 6 months! ha ha
I have burning nueropathic pain that goes from mid calf down to my toes. The spasticity in my gastrocnemius muscles on the back of my lower legs pull my foot down (foot drop) and causes golf ball sized charlie-horses in the the muscle. Those spasms also can cause the muscles in the bottom of my feet to spasm and curl my toes under so far I can't stand on my feet.
and I thought mine were bad, you got me beat! Sorry. mine is a deep deep ache, drs all look puzzled when I try and describe it.
thanks for answer!
I've had stabbing pain behind my eyes when I've had optic neuritis. I also have pulling/tight pain on the back of my left leg, almost like someone is trying to tear off my hamstring. And heart attack like pain from an MS hug that has led me to the ER.
You shouldn't have to suffer from pain.
I hope you can find something to help you, and a good neuro to see, so you can get a correct diagnosis.
Thank you Kelly, I have a letter going in the mail tomorrow to a neuro that someone says is wonderful.......at this point, I just want A dx !! and of course, pain meds....
last week I was on the couch all week with severe back pain and leg pain, fortunately today we just have way too many trips to the tinkle room!
Appreciate your letter, will definitely post as soon as I know something! After 5 yrs am tiring of being the guinea pig!
Thank you so much. Everyone kept telling me that MS does not cause pain and to suck it up. (not my neuro - didn't talk to him about the pain). I have pain allll the time - between the zinging in my arms and legs, feeling like I'm walking on needles with my feet, and as you know - the list goes on. Now I know it's ok and the pain is MS. My legs hurt almost all the time, too. Thank you again!
This week I had a sharp pain in my left elbow sometimes it would go all the way down my wrist and sometimes it felt like it was coming up my wrist.
My chest hurts occasionally sometimes its like the girdling sometimes its just on the right side just under my collar bone, just kind of tight. After my LP and on the 3rd day of IVSM I went to the ER for chest pain and they did every test in the book, all I got out of it was a print out on "weakness" I wasn't weak, my dang chest hurt!
My back hurts alot like I've been picking up heavy stuff when I haven't.
Sometimes it feels like the tendons in one of my feet are cut. I dont know if it's because I've been standing too long or what but it's only on one of my feet.
I have physical pain and have had it for over 5 years even before my dx. My general neuro started treating me with low dose anti-seizure drugs and they worked for a while then we would have to experiment with something else to ease my pain.
My pain sites include, among others: leg pain, rib cage (MS hug) , eye pain , biceps, quadriceps in legs, calves, feet, finger, scalp, face and bone pain.
My MS neuro also believes in treating pain in MSers as does the Pain Management doc I am currently seeing. Currently my "cocktail" includes: gabapentin, Trileptal, clonazepam, nortriptyline, Cymbalta and verapamil for migraine prophylaxis. I was put on Savella but it had no effect so I weaned off of it.Also my pain doc has me undergoing ketamine infusions.
Ketamine infusions are thought to "retrain or re-route" the pain pathways that are so ingrained from the MS pain. I will say things are much improved but are starting to slide a bit. I'm not sure if it's because I have a UTI brewing or the ketamine is just done all that it can.
I also received spheno-palatine blocks nasally that are going on week number 16, to ward off atypical face pain successfully. I still have some jabs and jolts and they are slowly increasing but the procedure can be repeated.
So, yes we have pain and yes there are doctors out there that believe we MSers suffer from pain. You just have to find them.
I hope you can connect with the neuro you were told about and I hope you find relief!
I have been in a severe amount of pain to where I am bedridden and fully disabled 24/7. My 1 of my 2 children does not remember me before the main health disease hit me like a ton of bricks. The medication Gabapentin/Neurontin damaged my nervous system as I had an adverse reaction to the medicine after taking a only a couple times. The pain is constant 24/7, 365, and is known as one of the most painful diseases known to mankind. RSD/CRPS has stole my life and turned my healthy, psychially active body into the absolute opposite. Strong pain medications do not even touch how immense the pain stays all the time. Never a moment of relief. I often waking screaming or crying out loud from the pain. My main areas of pain are from my waist down... my lower spine all the way to my toes constantly feel as if I have been ran over or severely beaten in the are. I have the same sensational feeling in between my shoulder blades. To top it off it ruined all the nerves over my entire skin organ. So from head to toe it feels as if I have open carpet burn. Showering is described as an acid spray to the entire body. The nerves are Always over active and Never calm down. It took such a Long time to Finally get diagnosed! I searched for years and nothing! I was also diagnosed with Ankylosing Spondylitis, which means my spine is forming into one large bone that doesn't have open space to bend and it crushes any/all nerves in the way. But the main cause of the pain is the RSD. Ketamine infusions are extremely dangerous but are Very effective for many people. Seeing as the pain in my legs is like Restless Leg Syndrome on Steroids. Like they stay in the constant state of what it would feel to be ran over.. I tried the medicine Requip for RLS and it Did take a layer of pain out of my legs. At that point, about a year after, I was able to withstand the pain enough to stand up and walk short distances. But, unfortunately, the unfathomable pain that is as extreme as it can possibly be has no cure and the treatments are limited and always unsuccessful in my case. The pain management with script meds do not give me much relief. Not even enough to sleep through it. I often wake up feeling as my skin is burning on fire and since it feels like it, I dream that I've been caught on fire. I've also experienced Sleep Paralysis many times and it is Not a pleasant experience. It's just so crazy that I gave birth without a scream or anything more than slight grunts... but this painful body I have now gets so intense that there is no holding back the tears, not screaming, etc. The pain is just too intense to withstand. Learning to become dependant on others for Everything has been a mental challenge as prior to this happening, I was independent and extremely active. That is all gone now. It took 3 years and 1 denial from social security to get approved for disability, but being so young, there's no quality of life trying to live of an entire $500/no. And now, my Medicare costs me an insane amount for my many procedures, treatments, refill appts, and prescription medications. I shpuld have my Master's Degree this year, but I have had to use 170 days of leave for medical reasons. Since there is no cure and the doctors cannot manage my pain to sustain quality if life outside of my bed (my school is online college) I will Never be able to use my education. Pain stole and ruined my life.. and my family's life. All of my friends are gone. Not one could handle staying around after this happened. Some tried very hard but eventually gave up. My life is a living Hell. It wasn't supposed to be this way. My children should have a mother that can interact with them outside of bed and be able to provide for them without having to have a constant dependency on family members to help do the things that I should be doing as their mother. RSD/CRPS is known as the Suicide Disease because the pain is too intense to withstand. I am living proof that the name being the Suicide Disease because it took a long time to stop thinking of any/every way that I could make it stop by killing myself. Death is something I begged God for. It consumed me. It wasn't until Requip, Strong Pain Meds, and Ketamine Infusions that the constant suicide thoughts calmed down and I accepted that I was not going to let this disease kill me... even though this disease doesn't kill you physically, it gets you mentally and emotionally as there is only so much one can take. So.. until more help for the nervous system is discovered, I lye in my bed and await the day in more pain than most people experience in their entire lives. :( I wouldn't wish this on Anyone!!! Except child molesters, rapists, and murderers.