Tell me about your pain, trying to make sense of mine

[Amore55]

I know so many of us suffer from horrible pain. I have had a huge increase in mine over the past two or three weeks. If a doctor asked me to rate it on a scale of 1 to 10, honestly it is at least 12! How do you cope with your pain when it is so bad? Please offer suggestions! Much love to all, Kelly

[jimeka]

I rely too heavily on my microwave heat pad. I have even burnt myself but at least it takes my mind away from the pain. So sorry that you are going through it again. Does yours come in fits and starts? Big soft hug 🤗

[Amore55 in reply to jimeka]

Yes, mine comes on strong, gets a bit controlled with meds, then comes roaring back. Burning oneself is a real problem. Because my arms and legs are numb, I have to be very careful ironing! Also, shaving my legs is real adventure. If I cut myself, I usually don’t know it until I have bled all over!

Take care. Thanks for the response.

[bxrmom]

Amore55 how often does this pain happen? I have found ice helps a lot of things when I have pain. I'm sorry you are having such bad pain. I sometimes use Aspercreme with lidocaine spray and lately, I have found that CBD rapid relief balm helps. I hope you are able to find something. Maybe calling your doc to see if they can help? Keep us updated.

[Amore55 in reply to bxrmom]

This is round the clock, 24/7, every day pain. Never really a break. Always have had pain, but this is a whole new level.

[Kenu in reply to Amore55]

I have had constant pain for over twenty five years. The best thing I ever did was nine years ago was a pain pump👍. From the effects of ms I have two herniated disks, bulged disk and bone spurs from the way I hobble. It has taken the edge of back pain and extremities (arm & legs) pain from ms. But probably the most help has been a positive attitude and prayers 🙏. I feel very fortunate to be walking, driving, and still upright 👍 Don’t live in yesterday or tomorrow, just for today 👍😉 Ken 🐾🐾🇺🇸

[Boxofchocolates]

I'm sorry to hear you are in such pain. Generally when mine flares up it is for about a 2 week period at a time with constant pain in my legs & feet. My neurologist says thats spasms and he prescribed Baclofen which I take 3 daily now even if I think "maybe I don't need it today" because I just don't want that awful pain to flare up again.

Also, even though it doesn't sound good, a dip in a cold bath for a few minutes has helped some when the pain is bad. Something about the cold water and the muscle spasms.

I hope you find some relief soon.

[Amore55 in reply to Boxofchocolates]

Thank you. I do love a cool bath on a hot day!

[agapepilgrim]

Had a home doctor visit a few years ago. I’m sitting in recliner, lower back burning pain, upper back between shoulder muscle spasms, cervical migraine, calf stabbing pain - all ever day stuff, you know? So she asks, “what’s you level of pain right now, I say about a 9. She gets all scolding, angry in her verse, lF YOU were in level 9 you would be in ER right now! I said, why, what could they do but give me opioids?” I go when I have pleurisy, when I gasp for breath, when it’s last minute labor pains. You don’t live with our daily pain. People just don’t”get it.” Crohns pain is horrible. When she had her first child and was in labor short time, no time for pain meds to set in, doc asked her how did she cope with the labor pains? She said “I put up with that pain and more several times a week with Crohns attacks”. Then I understood. She was 19. Now in my pain I think of her. Someone needs to make a new pain scale for us who have deep never going away and never ending, just temporary stopping, pain. Rambled enough. We deserve to have a med to STOP the pain, if we have cognitive ability to control taking it. Good night, John boy

[rjoneslaw]

I can have back pain so bad that I just have stop moving. Sometimes it feels like it hurts to blink . I just spray arnica capsicum

[erash]

I wish you all to be relieved from your suffering 🙏

I am so grateful for the gamma knife that has kept my trigeminal neuralgia away

[cindyrn68]

Praying for your relief and comfort. Why do so many resources say that pain is not an issue for people with MS? It certainly is for me!

[Juliew19673 in reply to cindyrn68]

Who says "There is no pain with MS?"

[cindyrn68 in reply to Juliew19673]

CDC, Mayo clinic, and NIH list pain as "uncommon" in MS. Many research articles say the same. I disagree.

[greaterexp]

I'm so sad to hear you pain is at this level again. I wish I had more suggestions, but I surely am praying that someone is gifted with the knowledge on how to help you. Kenu has a great suggestion about the pain pump if you haven't asked for one yet.

[Elizt3]

where is your pain? mine is in feet, lower legs, and ms hug area. i have found that compression (the appropriate amount) can ease it. I use these items I found on amazon:

amazon.com/gp/product/B0743...

amazon.com/gp/product/B074P...

amazon.com/gp/product/B004U...

[carolek572 CommunityAmbassador]

I have never been in your level of pain, Amore55 I can only talk about having a migraine ~ that level of pain. I am not sure how I would react if I had pain like you describe. A pain pump might be something that you can use, I don't know. Keep Smiling

[MarkUpnorth]

Sorry for your pain. I know it well. Mine is/was (it's now squelched in a few minutes every day). Luckily? It only occurs at night. Every night. As soon as I lay down for the evening, here it comes. It used to keep me up essentially all night. I lived on very little sleep for years because of the pain. I had my neurologists, plural, run me through all the drugs available. I'm sure many of us here have been on most of them. Some worked a little bit, for a little bit. Helped the pain a little, after first starting the script, but then after a few months, nothing. Move on to another one....and repeat. I resorted to trying to pass out on alcohol. When you're that extremely tired in the middle of the night, it only takes a shot or two. That was the only way I got to sleep without struggling/waiting it out till 2 - 3 A.M., tough I was really needing to get to sleep by 9PM.

Now, per one of my Neurologist's recommendation, I vape cannabis flower or even hemp flower. He stressed vaping, not smoking, and did not recommend edibles, why? High CBD flower is what I look for. CBD is what does the trick for my pain. Others with higher THC rather than high CBD did not work as well. A couple puffs off a vape tool, which heats only to a point well below combustion (as in smoking), and like magic, the pain is gone. Inhalation is much quicker than ingestions. Indica's help to sedate as well, since mine is at night, that's what I want. Hemp CBD is from the Sativa plant, and tends to be energizing. But, I'm too tired by 9PM to let it, or even caffeinated coffee keep me up. So it works. If using hemp, hemp is essentially THC free, so it is Federally Legal below some magic THC limit, but I wouldn't travel with it, because each state or locality may have it's own rules. So then, I'm back to the bottle, unless, which I have been able to do the last few trips, find a local CBD store, where I get CBD edibles, which are slow to work, and for whatever reason, never seem to work as well.

Worth a try?

And to this day, no CBD to quench the pain, it's still there. Unbearable. A 12 on a scale of 1-10.

[Amore55 in reply to MarkUpnorth]

Mark, thank you for some great advice. I am willing to look into and try basically anything. Hope you are doing okay and your family is well. Love, Kelly

[RoyceNewton]

atare at the ceiling, close your eyes, let the pain hit you then wash over you like aa wave, then hit you again. Play some soft mucic on repeat and lie back, RELAX. Expect it to hit you, then slowly wash away. Do not fight it, you will lose. Accept that it is happening try to ice wherever it is starting to ease NY INFLAMMATION. DO NOT FIGHT IT.

[RoyceNewton]

Sorry, Trigeminal Neuralgia left side of face then right side of face.

[152114randal]

Hello Kelly

I do not have MS, my wife does. I don’t t even know how this site appeared on my browser but I am very touched by your post. My wife had terrible nerve pain, she also said it was a “9” and had a couple of doctors pop poh the level but it was 9 to her, she had tears in her eyes all the time. I won’t bore you with our ordeal but let’s just say she saw a lot of doctors before she found one (a nun as well as a physician if you can believe that) who put together a cocktail of drugs that today her pain level is a 1 or a 2. Every so often she wants to see if she can reduce the amount of drugs and right away the pain starts to inch up. Today she is on the following: for pain one lyrics 50 before bed, 3 lyrics 25 spread out throughout the day. Generic lyrica and methadone are inexpensive drugs. For energy she takes concerta 36 mg, brand if you can afford it and to keep her spirits up, symbyax 3-25 mg Also brand if you can afford it. Methadone sometimes has a stigma attached (if you care about things like that, I do not)to it so have your doctor prescribe it “for pain” Methadone is very effective in relieving pain. Like I said Kelly today she is basically pain free.

I wish you all the best.

Bob

[Amore55 in reply to 152114randal]

152114randal. My career was working in a Methadone clinic as ClinicalSupervisor! I totally understand the stigma of methadone. It is a great pain reliever, just difficult to get prescribed. I am so happy that your wife has found great relief. I believe I will approach my doctor about this “cocktail” and get his opinion. I cannot thank you enough! Much love, Kelly 😄

[152114randal]

Kelly, what state do you reside? I ask because in south Jersey where we are there is a PT facility that is a hundred percent devoted to MS patients where you can do all the exercises needed under supervision as well as receive necessary massages and and tens unit stem treatments. I believe there is another one in Boston.

I look at doctors as advisors, not deciders. I want to hear their opinions on effectiveness and risk but I would hope they will go along with my decision as long as I am not risking my health. I remember we went to another doctor for an unrelated matter and he looked at my wife’s list of meds and very disparaging said he doesn’t understand why she is taking what she was taking and I replied that it took a lot of footwork to find a doctor that was able to put it together so she has quality in her life. He immediately backed off and apologized.

Good luck Kelly, let me know what he has to say about it.

Bob

[152114randal]

Kelly, I neglected to say in my original post. She is prescribed 5mg methadone which she split one half daily other half as needed which she doesn’t need very often.

[152114randal]

Kelly, we’re you able to do anything about your own pain?

[Amore55 in reply to 152114randal]

Wow, so happy to hear from you! My doctor just would not even consider the methadone, in spite of my experience working with it. I was so disgusted. But it is okay. My pain is still horrible, but maybe I am learning to deal with it better. I just take what is prescribed, and some Tylenol, etc and hope for the best!

Hope your wife is doing good. And you too! You really made my day! Can we stay in touch? Kelly

[152114randal]

Oh Kelly, how kind of you to say that. Of course we can stay in touch. If you want I will send you our email address .where do you live Kelly? We are in south Jersey. I’m Bob and my wife is Angelika.

[Amore55 in reply to 152114randal]

I live in central Kansas. I will private message you with my email. To private message, just click on my name at any post we have exchanged. Then it will offer you a choice to “Message”. When I private message you first, you can just use the view message button, then read it and just reply. Pretty simple! Would enjoy staying in touch with you two😃

[falalalala]

I'm sorry to hear you're in pain.

I don't have too much of a problem with pain but once in awhile I feel a sharp pain in my feet.

My husband brought home a frankincense and myrrh oil that he rubbed on my feet and it really seemed to help.

Another happy "side effect" was after he got it on his hands it dulled the pain on the end of his finger that was cut off in an accident.

It may or may not help with the pain others have but it is not expensive so it might be worth a try.