Chronic daily pain: i’ve been living with... - My MSAA Community

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Chronic daily pain

dallas343
dallas343

i’ve been living with multiple sclerosis for 14 years but in the last year I started to have a lot of severe pain in my shoulder back and right leg . Was also diagnosed with herniated disc. Pinch nerve and degenerative arthritis in my spine . Was wondering if anyone else is struggling with a lot of pain from these issues and what they been taking for pain . Also been told that pain does not come from ms.

25 Replies
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Hi dallas343 I to was diagnosed with MS 14 years ago I do not have the pains that you have but I do have the souls of my feet that are numb all the time my hands are numb I also have foot drop on my left foot boy I read the things that are wrong with me and it looks like a grocery list and let me tell you I have much more I could add to that list. Well I hope your having a good day. Bye for now.

dallas343
dallas343 in reply to ssdw1958

Thanks so much for sharing I think part of the problem is because it is so frustrating because there is no one treatment that works with the disease and is pain. I’m going for the epidural treatment for the third time next week and hoping that that helps

I have two herniated disks, one bulged disk, and four bone spurs all caused from the way I hobble from MS for the last twenty five years. My right foot had had surgery on big toe and little for hammertoes with three to go.. pins and needles in both feet and hands all from MS. Seven and a half years ago I had a pain pump implanted and replacement six months ago. I was at a ten on the pain scale prior and now on normal days a four👍. I don’t have to take any oral medication for pain. For me the pain pump has been a life saver. The medication does not effect my mind, liver, or kidneys, that is also great 🙏. 🐾Ken

jimeka
jimeka in reply to Kenu

What medication is in the pain pump and how does it work? Blessings Jimeka 🦋 🍫

Kenu
Kenu in reply to jimeka

Morphine and is setup 24/7 with a remote to do bolus as needed every four hours. It is in my right side just under my rib cage and has a internal surgical tube ran around and taped into my lower spine. Before I had to take numerous medication to even touch a little bit of the pain and then didn’t feel right 🤷🏼‍♂️. This has been great with out side effects of opioids. 👍🙏🐾. Ken

jimeka
jimeka in reply to Kenu

Thank you, I hope that it continues to work for you. Blessings Jimeka 🦋 🍫

dallas343
dallas343 in reply to Kenu

Thanks so much for responding i think part of the problem is because it is so frustrating because there is no one treatment that works with the disease and is pain. I’m going for the epidural treatment for the third time next week and hoping that that helps. Be Well my friend

I've read repeatedly that the statement MS does not cause pain is an old myth. 🙁 But it's true that pain may have many causes in addition to MS. It's important to try to identify the cause as the treatment is specific to the type of pain - nociceptive, neuropathic, spasticity...

KarenUSA
KarenUSA in reply to erash

I found some links to explain the different kinds of pain you mentioned. You’re so knowledgeable.

erash
erash in reply to KarenUSA

Thanks! But that was my job 😊

dallas343
dallas343 in reply to erash

Thanks so much for sharing. I think the vast majority of my pain is spasticity which affects my entire right side from my neck all the way down to the bottom of my foot and the other pain appears to come from the pinched nerve and sciatica in my back . I think part of the problem is because it is so frustrating because there is no one treatment that works with the disease and the pain. And unfortunately because the doctors are inconsistent makes the situation even worse . Thank you for taking the time to respon

Jesmcd2
Jesmcd2CommunityAmbassador

Hi and welcome dallas343 whoever told you that lied! As there is pain with MS, but as erash said, you have to figure out where it's coming from.🙁

I have had 2back surgery's, permanent sciatic nerve damage, herniated discs and arthritis in the neck, with bone spurs. And degenerative disc disease. So pain? Yup☺️

But I'm walking!!😀 And moving as much as I can! Even if I have to take breaks in between.

I take tramdol when I have to. And with allot of practice, you can, "push" or meditate the pain away.

I wish you tons of luck! 🤗💕

J🌠

dallas343
dallas343 in reply to Jesmcd2

Thank you thank you . Forgot to mention I also have degenerative arthritis in my spine and spinal stenosis . But it appears that tramadol is a great option for pain so I’m going to mention it to my doctor I think you

dallas343
dallas343 in reply to dallas343

Thanks

Dallas. Don’t believe for a minute that ms does not cause pain. Believe me, I suffer 24 hours a day from absolutely excruciating pain all over my body. And I know others here suffer also. Lately even my toes and hands hurt so much I could scream. But back to you...I am truly so sorry that you are suffering. I pray that you can find some relief. Love, Kelly

ssdw1958
ssdw1958 in reply to Amore55

I have to agree with you I have pain all the time the sharp pain on the souls of my feet It morning, noon and night and I feel night is the worse because I can’t sleep because of them. I might joke around some time but this really

Stinks and I know even though we don’t say it our lives would be so much better if we didn’t have this monster with in us I would rather have only my kidney stones or the raynards.

Sorry about that but I had to get that out today.

I dont have back pain any more but i know another person with MS that has SPMS and extreme back pain. She was bounced from doc to doc and finally went to pain management clinic. She gets epidural shots that seem to help with her pain.

I’m going to the epidural shots next week And the third time I’m praying

She said she gets headaches after each time. U may wanna ask if u can take anything beforehand so u can skip those

I'm having similar issues with the same on left side. Fifteen years i have search. I have not found specialists yet but close. Nothing for pain relief. Trying medical marijuana but need to get card. So much takes time. Getting some help for medical from state. Wishvi could help more.

I was diagnosed 13 years ago and have pain from MS the whole time. It's pain from nerve damage, pins & needles in my feet and legs, numbness on my feet & hands that cause pain because it feels like I'm walking on rocks. Yes, there is pain from MS. I also have back pain. I degenerative bone disease along with spurs in my lower back. I take Naproxen and Tramadol for the pain. It helps to keep it in check but doesn't take all the pain away. I have had the spinal injections and the nerves deadened (can't remember what that's called) & for me, they didn't last very long. With those treatments everyone is different. Mostly I just push through the pain, there are other things in life that are more pleasant to think about than the pain in my body. There's an old saying "If you don't mind it don't matter." I have adapted that to "I refocus my mind so it don't matter."

I have developed pain in my lower back which radiates into each hip. I'm sleeping in my recliner now because it's more comfortable. I'm seeing a pain doctor this Thursday.

I was told by my Neuro (after I came home from the hospital in 2016) that I will experience pain and emotions like never before because of my MS. Nerve pain is the worst. Almost like electricity running through my nerves. Everyone is different. I wish you the best. ❤🌷

I've only been dx 3 yrs this December. I've experienced some level of pain for over 2 1/2 yrs. Mine mainly is lower back(which gave me trouble before,but is far worse now)legs,shoulders(front and back) and torso(MS hug ). My first neurologist told me there is no pain associated with MS and I was to take ibuprofen. My current neurologist and I are talking about alternative methods for pain relief. He's raised my baclofen dose and that helps a little. I am researching CBD oil as a possibility. I've heard very promising stories that it helps. Not sure which way I am going yet. It's a work in progress.

ssdw1958
ssdw1958 in reply to Gnugirl

I am very proud of you for loosing that first Doctor, remember you are your best advocate. I had my PC doctor say my foot drop and my issues about my MS was women problems that’s why I had to diagnose myself before anybody would listen to me I had my PC doctor say my foot drop and my issues both my MS was women problems that’s why I had to diagnose myself before anybody would listen to me.

I hope you start to feel better. Have a good day

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