Written by Larry Kellerman
“Few things a doctor does are more important than relieving pain. . . pain is soul destroying. No patient should have to endure intense pain unnecessarily. The quality of mercy is essential to the practice of medicine; here, of all places, it should not be strained” (Marcia Angell).
Yes, pain is soul destroying. I watched that with my wife, who suffered from the intense neuropathic pain that accompanies multiple system atrophy (MSA) for many patients. From the start of symptoms until her last breath chronic pain was her defining symptom. When a doctor would ask what her pain level was on the scale her response was typically “Higher than 10, more like 12 or 13.” When a body is fighting that level of pain the physical and emotional stress become overwhelming.
I bring this up because of a recent series of communications with a good friend of an MSA patient. She recently became re-acquainted with her friend after being absent for several years. During the conversations they shared her friend told her about the pain she was suffering and the lack of any medication to touch it. By the end of our first conversation I had shared with her the link to the MSA Coalition’s newly updated “MSA-What You Need to Know” booklet and a short summary of my wife Colleen’s experiences.
After the phone call my curiosity was piqued; what if any new developments in pain management for MSA patients might be found through an internet search? One of the first articles I found was a 2015 article “Pain in multiple system atrophy and progressive supranuclear palsy compared to Parkinson’s disease” (Kass-Illiya et.al., 2015). The article reported the results of a small sample-size study (102 patients total) of which the aim was “to evaluate pain intensity, location, and associated symptoms in atypical parkinsonian disorders compared to PD.”
The findings were striking for the PD and MSA patients. Of the 65 PD patients 89% reported pain as did 81% of the 21 MSA patients. Even more startling – 100% (14) of the MSA-P (Parkinson’s) patients reported pain, while just 43% of the MSA-C (Cerebellar) reported the same. Location of the pain in the MSA patients was from the neck down, with the legs receiving the most reports. In other words pain is an undesirable companion on many an MSA journey.
This past Saturday evening I received an email from that friend. The MSA patient had passed away the previous day and she just wanted to say “Thanks” for sharing. The message read in part “I’m very sad because I will miss her very much. But I’m relieved that she is now out of pain.”
I started this post with a quote from Marcia Angell. Part of that quote is “…pain is soul destroying. No patient should have to endure intense pain unnecessarily.” There could well be 80% of America’s MSA patients (~20,000) who would resoundingly say “and that’s an understatement.”
Written by Larry Kellerman, MSA Coalition Board of Directors & Support Line Volunteer
My pain from MSA is with me every day. Between my headaches and neuropathy pain in my feet and the shooting, burning pain going up and down my legs, there are times I litterly want to scream.
I also get very strong bladder spasms and abdominal pain. Sadly it tends to jump all over the place.
I’m new here and I came to this site researching MSA and foot pain and it was mentioned in the first comment I read. This disease just keeps giving! My feet feel like I have stone bruises so f which I do not have.
My name is Marina, I’m 58 years old and live in Boone, NC.! My story is miserably long so for now I can say I was diagnosed about 5 years ago but I’ve had it longer than that. I’m still able to walk and do my oh so boring daily routine. I took myself off the road about 3 years ago because I was seriously in doubt of my safety and, more importantly, the safety of others. That was a hard one!!! It’s still hard! Hell, thanks m only 58!?!? Of course I’m sure there’s quite a few of others here that are experiencing the same loss of freedom of movement, it just sucks.
Well, I hope I’m welcome here and look forward to hearing what others like me are experiencing.
Peace to all
My husband has MSA, and he suffers from severe pain, He has neuropathy pain in his feet, legs and back. Lately he has develop pain in one hip. He gets some relief when he takes marijuana drops (luckily we live in a state where marijuana is legal.). He also gets some relief from naproxen.
My husband has MSA, and suffers from joint pain, mostly neck. For now, he’s on mobic in am, Tylenol at night. I rub icy hot on his neck several times a day.
I have neck Pain also and I have question about your symptoms. I was diagnosed with dysautonomia and but I not sure what type of dysautonomia I have. I am seeing a Pain doctor and he did some tests on my dysautonomia condition and it was abnormal and I am waiting for the results for it. This is my first time reaching out to someone out side of my family for support also I have seizure. I thought you can help me. Was diagnosed with the dysautonomia first back in year 2013 and the the seizure in year 2016. I don’t know what to do about it because I went to the doctor that dysautonomia before I went to my he is a physicist doctor who is a physicist. The doctor that I I saw back in year 2014 was a cardiologist and also did a dysautonomia test and it was also abnormal. I did some research and there are many different kinds of dysautonomia condition. I was wondering what you think I might have I can give you some of my symptoms they are can’t regulate my body temperature, feeling like I going to pass out when I get up,high blood pressure, get full fast and get sick after I eat hours later and sometimes throw up like food just don’t get break down hours or day later after I have a small meal or I have a snack. when I first got the condition I at first would get just full and nauseous .but now I would get sick and throw up the food hours after I had a meal or in the following morning before I have any thing to eat it started back in April year 2018 I had an episode today December 17 of 2019. I can’t work because I have so many health problems and I am at a loss and I have don’t know anyone who has the dysautonomia I thought you can help me get support from you or someone I can’t get the I can’t get a MRI of my neck to see what is going on because I don’t have insurance to pay for my health care but I am applying for social security benefits and hopefully that I get accepted for it so I can get this this figured out and have a better understanding of it I think I might have gastroparesis dysautonomia condition can cause gastroparesis I look it up and it will explain my gastrointestinal problems. I can’t get it tested because I don’t have any insurance. I think that I need to go to a dysautonomia specialist that specializes in dysautonomia and and can help me more. I looked up specialist in dysautonomia and there are none here where I live and I can’t afford to go to a specialist in another state. If you can help me I would be appreciate it!!!!
My name is Karen Derocher
Check out dinet.org web site it is a forum with many helpful, loving fellow sufferers. I learned so much in my early days before being diagnosed.
Also check out Dysautonomia International. Also a wealth of solid information and science.
Good luck, it’sahard path and support really helps.
Hi Karen. My name is Bill and I was diagnosed with dysautomia in the beginning, then it was changed to Shy-Drager Syndrome and finally MSA. It turned out my nausea was actually caused by too many red blood cells so I have to have my blood drained every other week. As for the dysautonomia, a good neurologist is what you need. My PCP diagnosed me first, sent me to a neurologist who diagnosed me with the same diagnosis after he had sent me to a neuro-muscular guy at Baylor in Houston. Good luck with your disability endeavor. It took me 3 years to get mine but I was 42yo at the time. I’m told after age 50 it is easier to get but still a little lengthy.
Do you mind sharing who you saw at Baylor?
In our son’s case (age 25) pain is the worst of what we deal with. Our pain Dr.’s have given him what they say is the max amount of morphine and hydromorphone even with the MSA diagnosis. Why won’t they understand that he needs more?
My daughter also have the most unbelievable pain,i don’t know what to do,she screams sometimes and i cant take it.
She is not a person anymore,and she is just 21.
Hi there by any chance she toke any fluoroquinolones antibiotics like ciprofloxacin or levofloxin
My daughter, who is 55, was diagnosed with Parkinsons and later updated to MSA. Her desire is to die at home with her sister and myself. We are doing homecare along with my grandsons and my sister. It has been a year since her diagnose, and she is noticeably shaky and fell in the middle of the night, just to tidy the kitchen. No more walking, and her broken shoulder from the fall, the CCAC nurses say dont even bother going to the hospital for check ups, the exercises that my daughter was told to do, have all of us crying along with her. The fracture clinic doctor have never heard of MSA. My daughter is on hydromorphone, and we add Tylenol 1 or 2 with that, because with her condition and broken shoulder prescribed drugs are not putting her at ease. No one in this day and age should suffer from this kind of pain. Doctors need to learn about MSA and give RX that not only ease the pain but eliminate the pain. At this stage getting addicted to the medication is not to be even considered, as it is only a couple of months, and as her loved ones we would like to site in the sunshine together, have a few laughs, and live pain free for every second left.
I have MSA and can relate to what is happening. Reason I wanted to reply is you mentioned CCACin your post. If I am not totally mistaken you must be located in Ontario. I too am in Ontario. I have yet to know of another individua in this location who is similarily stricken with MSA. If possible it may be helpful to exchange information/experiences of our health care system for which in my case knows absolutely nothing about this hideous disease.
I was diagnosed with msa this year . I did not know for 3 years what was wrong with me.
Hi Carol. you sound like a real MSA warrior. I too started with Parkinsons, 6 years worth then i got told i had MSA. Ive Lost my large intestine have an ostomy bag, have a super pubic catheter, have an enlarged heart, my pancreas is severly atrophied. i use a cane cause i keep falling. I dont know where i go from here, this summer i had blockages in my small intestine 4 times, i too want to stay home i told my kids if i get the virus leave me here to die. i dont want ventelators or feedimg tubes i only eat once a day. im really tired and pray the lord will come and ttake me home. God bless yo
my cousin was diagnosed with MSA at age 79 (about a year and a half ago). He is on the west coast and I am on the East coast, so it is difficult to go and see him. He is in the hospital (palliative care section). They tell me he has a lot of pain. sometimes he gets infections too that they treat with antibiotics. The doctor in charge is saying next time he gets infection, may be we should not treat the infection, so he dies peacefully. They want agreement from the family. Is that normal?
I was just diagnosed with MSA, I believe I may had longer than I realize as I thought my neuropathy was from different surgeries over the past years as well I have poly myalgia and fibromyalgia the pain upon moving on inclines and stairs is very bad also my neck and back pain is intense. I am losing balance and falling also my memory has all but left me I call it CRS (can’t remember shit) . Scans show abnormal shrinkage in the back of my Brain, for some reason I feel my professions and hobbies have played a part because I have worked in and handled industrial chemicals all my life including spraying them , all of this in enclosed areas and no breathing apparatus (my blame) tremors were bad for a long time but it was thought to be my meds but since taking a Parkinson’s medication they have greatly subsided. I’m new to all of this as my diagnosis was just a couple months ago , my wife says I drive like Ray Charles so I don’t get around much unless I sneak out to do errands, I’m somewhere between a NASCAR Driver and a demolition derby contestant so I’m quitting. I’ve cheated death my whole life between surgeries, lifestyle, and career so I accept this diagnosis without remorse or fear ,I look at it like my last slide to Home and I can only hope it’s a long one .
Hi Skip I just read your paragraph it sounds a lot like me I would love to be able to talk to you if possible can you please call me at 708-525-7769 it’s just very hard for me to type thanks for your consideration Ken
My father has suffered from a disease we thought was Parkinson’s since 2014. The symptoms started to show when he started complaining of headache, dizziness and forgetting things before 2013. In 2014, he become worse and a neurologist told us that he had Parkinson’s disease. We have treated Parkinson’s symptoms since then but I always thought it was much more than that because he wasn’t shaking at all. Recently we met with another young neurologist/doctor who told us that our Dad had MSA. I asked google about it and I believed the doctor because its exactly the condition my father has. We are currently in hospital and he can’t talk, move or eat anymore. But I think he has no pain at all, I thank God for that and I wish he could live without pain for the rest of his life. I couldn’t stand to see him suffer with all that pain. I am writing this from Uganda, in Africa where most pipo I including doctors have never heard a disease called MSA. I would like to encourage all people diagnosed with MSA and their families to be strong and learn to live and help each other. I also would like to remind all of us that at the beginning and end of everything where we totally don’t know what to do, there’s God. Always ask God to take control and may His will be done. God bless you all. God be with you my Dad, Stephen Twine.
Joshua, my husband has been diagnosed with MSA-P and I was just wondering, how long from the time your father was in a wheel chair to the hospital where he can’t move or eat. My biggest fear is the unknown to when my husband will get to that point.
My email is momofcam2@yahoo.com.
God Bless you and your family.
have recently had two MRI’s and PET SCAN and both say MSA. I am 64 and besides and balance issues and abnormal MRI’s no other symptoms. The neurologist has not treated anybody with this and one possibility is going to Boston. I did receive SSDI without problem so retiring early.
‘
My husband has just recently been “upgraded” from a diagnosis of Parkinson’s in 2016 to Parkinson’s Plus (MSA). His joint pain and abdominal “issues” have been a constant for the last two years. Now I know that they most likely are MSA “gifts.” He is NOW seeing a cardiologist for “heart issues. I guess those are related to MSA also. Where does it end?..seems to be an ailment that can cause MANY different symptoms. I give a copy of the Mayo Clinic MSA description to every new physician we see, which puts a better perspective on whatever treatment is suggested.
I got msa from taking prozac 4 as little as 2 1/2 weeks with nerve pain in whole doctor dont believe me but I exercise every day all my life then took prozac and developed autonomic dysfunction tremors myoclonos
I was diagnosis with Parkinson’s in 2014 and then in 2015 updated to MSA P . Then in 2019 they changed my diagnosis to minimal MSA P, Looks like I am one of the lucky ones. I have a lot of blood pressure problems that goes from 68/50 up to 195 / 108 plus many other problems. I just stated a medicine that is helping that B P problem.
Not sure if I am allowed to leave my # but I will try , I live one hour from Pittsburgh Pa.
Please feel free to call if you like !!
304 281 3977
Hi Francis,
If you would like to speak to someone on our support line the number is 866-737-5999. Leave a message and a time to call you back. You can also email us at info@multiplesystematrophy.org
Best regards,
Pam
Thankyou for this support info Pam. My husband has MSA and has had his bladder removed, then his prostate, and now needs a tracheotomy, probably happen in January. He experiences terrible headaches, BP irregularities and is now suffering terrible knee pain. He is a veteran and so is in the VA system and receiving excellent care, but of course can be very dispirited. At the same time he puts on a good face. I worry, mostly about falls. We put a stair thing in, so at least falling on stairs will not happen.
Hi Sarah, You certainly have a lot to deal with. If you would like to connect with others going through similar challenges we encourage that you join one of our online forums or call our support line. 866-737-5999 Also olease check out our resources page. https://www.multiplesystematrophy.org/msa-resources/
Amen I can relate to a lot of what I read here I was diagnosed in 2015 with Parkinson’s like that wasn’t, bad enough. I Got updated this year to MSA I new this was progressing way to fast for it to be Parkinson only. No family history.I think it must be like Skips working with chemicals I have worked with other stuff also but who knows .I keep praying and looking up asking for relief of the sickness and pain and to come home I know where I’m headed and where it ends I trust In him
My husband went from walking to falling which brought on the walker to know only walking with holding on to me (I walk backwards) or in a wheel-chair in just three years. I felt he had Parkinson’s but due to him not having shakes they continued to deny it. MRI’s to CT scans and any other test and still no definite answer. Then I had a melt down in the neurologist’s office. The doctor reached down and picked up my husbands foot and took his finger and rubbed under his foot making his toes curl upward. He looked up and said I’m 99.99% sure your husband has MSA-P. He wrote the name down and sent us out the door. No other explanation except to say he would recommend a second opinion for another doctor and said he would have them contact us. Corona 19 hit and no-one contacted us.
In the mean time, my husband cannot do anything unless I am there to help him. He is currently using a catheter (which is a life saver) and only walks to the shower and to his bed which the pain is so bad he can’t lay down for long.
I was devastated after googling and researching doctors papers. Finally I contacted Hospice care in our area. I explained the situation and they contacted all the doctors involved and read his papers and agreed he has MSA-P. They have taken his care over and it has been a God send. I no longer have to take him to doctors to get meds or check him for infections which he gets alot. (Not from the catheter but I guess it is just his system). They check on him and when he became anxious for the first time this weekend, they were there to help. We don’t know when his symptoms really first appeared but just in the last three years he has progressively gotten worse. Hospice has been the only medical resource and I would only trade their services for the cure to MSA-P.
University based hospitals may know more about MSA. Our neuro referred us to Johns Hopkins in Baltimore and they were able to diagnose my husband. These facilities sometimes have specialty clinics and support groups. I would advise people to look there.
i have GBS which i had in my 20’s and now has returned when i was 58. now 68, i’m still suffering from this disease. Doctors won’t prescribe any more pain meds! i’m hurting, i feel like i’m on fire! can you help me?
Hi Janet, So sorry that you are having pain. Have you asked to be referred to a pain specialist? We recommend you get in touch with the
GBS/CIDP Foundation International and ask if they can refer you to resources. See: https://www.gbs-cidp.org/
What about information on a combination of drugs, vitamins, protein, anything that would help pain – treatments, massage, foods or things you should not do.
My pain has increased 10+5.Medication takes the edge, but when it wears off, it’s overwhelming. I’m on maximum dose, can’t have more.I feel I get the brush off when I ask for help.All other symptoms beginning to happen.Cant eat feel like vomiting, shortness of.breath, not much help.Cant take much more. Want to die.MSA not familiar in Australia.