Old-timer sick of being sick.

[Lisacpa]

I was diagnosed in 1991, when there were no DMTS at all. I managed pretty well until 2012-2013. Now, I am beginning to feel helpless. I never had any pain until a couple of years ago, but honestly, it's my absolute worst symptom - hands down! No one can explain it nor do they help at all.

[erash]

What r u or have u tried?

[DogMamma]

Lisacpa, don't give up. I don't have MS but Fibromyalgia, but care giver to husband who was diagnosed with MS 2004 and my best friend (since we were 18 - 69 now) diagnosed 1997. I do not know your pain but I see my husband and my friend - I do not know their pain, but I see the pain and what it does. We know what you mean, but never let "it" win. With my fibromyalgia and OA , some days I wonder what the use! But then I see my husband and I know I must get doing. My prayers and good thoughts being sent to you. Blessings.

[Fancy1959]

Oh my gosh Lisa, you did not look old. You're beautiful. I'm Fancy1959 and welcome to this chat room. Many of us with MS are sick and tired of being in our fight against t. Hands down, my two worst symptoms are literally my hands and my balance . My hands are so numb that I have little to no fine dexterity them. Tactic sensory sensation in my hands is gone. Everything i touch feels like sandpaper to me. I have to use safety equipment when I walk. On good days l use a cane. On bad days a wheelchair. But that's okay I still get around and refuse to let MS to beat me.

But what's important for us to remember is that we are lucky to have MS. Yes, I said we are lucky. It could be so much worse. I have to tell myself this every single day when I allow MS to get me down. Then I pick myself up and realize how lucky I am. I lost one sister-in-law to pancreatic cancer less than two years after she was diagnosed. I lost a second sister in law to breast cancer less than three years after she was diagnosed. We have a fighting chance to beat this monster. We have to keep faith that each new therapy being developed might be the one to beat this monster. Remember together we are stronger. Information is always our friend. Never give up. Never give in to monster we call M S. Fight on MS Warrior. Fight on!

[3jaysmom in reply to Fancy1959]

Thanks for that, Fancy.. You are right.. It CAN be a lot worse. some days it seems like it's the biggest thing here, most days, not so much.

I survived breast cancer 3 b 6 yrs ago; bad dx and THAT was a fight!!

I have the hand stuff going on too. I'm so tired of things dropping. Pain is bad, and I'm allergic to most of the pain eds now, so I suffer more pain than normal, but most days, I soldier on.. like I tell a lot of ple.. what other choice do we have??

Hang in there. I understand!!

[Lisacpa in reply to Fancy1959]

Thank you. I am going to try biotin. Search Facebook for "Biotin for Progressive MS."

[Reneeblessed]

Lisa, only a fellow 'MSer' can relate to your pain. I am so sorry you are going through this difficult time right now, and tears are rolling down my face as i respond to your post. But i can only share with you my journey, and what is keeping me sane "GOD "!!! I am a control freak, and MS makes me lose control of my bladder, bowels, balance, and mood sometimes. I have learned to SURRENDER, and rely on Psalms 46:10 "BE STILL AND KNOW THAT I AM GOD". MS is not for the weak, because it is like a 24hour convenience store, something is always going on physically, emotionally, mentally. And its okay, you are exhausted, because you have been the clerk on duty,for the entire time, with no breaks. BREATHE!!!and know THAT,THIS TOO SHALL PASS,and you are going to be okay. I find, when I am left alone with my MS, its worse, but calling friends, exercising, , going to church, checking and asking other about their day,NETFLIX, Working....only by grace,and finding out let's like this, help take my mind off myself and focus on the present, which is all there is NOW! Let go, and Let God! Is freeing, i have enough to worry about, i pray and give it to him abd i feel 100000 times better. I will be praying for you.😚❤

[MSShine in reply to Reneeblessed]

Reneeblessed, I love your post. That is one of my favorite verses of all! I have most of the symptoms you listed also but I would take on more if we could make my pain go away. Unless you have experienced unstoppable

pain, 24x7 week after week, year after year, there is no way possible to imagine it.

[Reneeblessed in reply to MSShine]

MSShine know that you ARE LOVED! No one can truly say they know how you feel, but I use prayer, optimism, and family members as lovely distraction. In the midnight hour is when i feel it all, and i have had times I call on God out loud, but I believe "This too shall pass!" I AM PRAYING FOR YOU TOO! YOU ARE BLESSED 😙

[Lisacpa in reply to Reneeblessed]

Thanks Reneeblessed.

[cljones in reply to Reneeblessed]

The scripture that helps me is Isaiah 41:10 "Don't be afraid for I am with you. Don't be anxious because I am your God. " We all need inspiration from someplace and the bible is mine. I also try to go somewhere each day. I get to gather with someone almost everyday. They really help me.

[Hidden]

Lisacpa, if you're an old timer, I want what you're having! You are beautiful.

It warms my heart that so many of us MS'ers trust in God. Pain, exhaustion, depression all feed off of one another and we need to break that chain!

Sometimes essential oils help. If pain stays in one spot, I can relieve it a bit by using Panaway. If putting it on your skin is uncomfortable, using a diffuser in the room you're usually in can be very helpful.

Hope you are feeling better RIGHT NOW!!!

[Vlbrown57]

I also suffer with pain but the doctors took away all prescription pain drugs. I asked why they expect me to just deal with this pain and the neurologist confessed that the FDA warned all M.D.s to get patients off meds or be disbarred. Pathetic excuse in my opinion. I use emu oil and arnica gel which helps a little bit. Sorry to see the government tell doctors how to treat their patients. Hopefully you get relief somehow.

[Fancy1959]

Vlbrown57

Hello, I'm Fancy1959. Have you checked with any of your friend, talked to other doctors, or even taken a pole of MS patients in your state or on this chat room? I am curious because I have been to multiple MS dinners with at.least a dozen different Doctors as speakers and I have never heard of a Neurologists not use pain relieving meds like Neurontin to help with MS pain. Using addictive pain killing drugs I believe is always closely regulated and restricted. Perhaps it would be worth your while to make an appointment to speak with another Neurologists or Doctor to get a second opinion. What could it hurt other than to ease ypur MS pain.I take 900 milligrams a day of neurotin to ease the tingling, numbness, and burning in my fingers and hands. It really does help. When I forget a dose of Neurontin my hands really both me and hurt

Reember information is good. If you need to chat again just make another post here and someone will get back to you. I hope this helped. But never give up. Don't let MS walk over top of you. When Ms knocks you down get back up. Keep fighting MS Warrior, keep fighting. Together we are stronger!

..

[Pbargal in reply to Fancy1959]

Does it totally talke your numbness and tingling away?

[Lisacpa in reply to Fancy1959]

I have been on gabapentin for a few years now but I don't think it helps at all, so I have tapered the dose down and now I don't take anything. No worse and at least it's one less drug in my system. I don't want to take any of the heavy duty drugs. I am able to help myself to a degree by applying cold packs as needed. I keep two in the freezer and apply nearly every day.

[Kj9681]

One name, Montell Williams. As an RN who has been living with MS since 2002 (dx anyway). What he's fighting for works for pain, spasms, and stiffness. To heck with stigmas. The big Uncle just wants more regulation to bring in the pecos. Consider what he's fighting for.

[MSShine]

Lisa, my second symptom (1st was numb foot) was horrible pain on the outside of my left hip and it is still the most horrible symptom because NOTHING they have tried has one ounce of relief. I am PPMS so I have a lot of symptoms but being in constant (minimum 7 on a 1-10 scale) pain grinds you down physically and mentally!

[Reneeblessed]

Acupuncture works too. My nerves felt like my arm would fall off , or i would naw it off. I had a few treatments along with physical therapy and I feel like a human" just walking like a drunk " DIZZINESS!!!

[3jaysmom]

Hi I'm in a state where the Neuro's aren't afraid of pain meds.. BUT i have had a Dr. who specializes in the tx of pain; and have to be pee tested every mpnth, use the min.. but he can rx, and isn't afraid to. I just can't tske the "lighter" pain meds, as I'm allergic to codeine, which they all have. So, I sparingly get "the big guns" every month. Doesn't ake away the pain altogether , but makes it livable.Try to find a pain specialist, please, where you are. some are found connected to hospitals here, they are the most reputable.

I use a diffuser with essential oils, too. Takes the edge off.

[Fancy1959]

I'm sorry I didn't respond back quicker but I'm been busy doing other things. The 900 milligrams of Neurontin I take a day doesn't totally take the numbness away but it reduces its significantly. if I forget to take it the tingling gets all but painful and the numbness gets much worse. Neurontin isn't the perfect painkiller but I'll take whatever I can get. It does make the tingling and numbness in my hands much more livable. As far as Rene the Blessed I too am also a control freak Renee. and I suffer many of the same symptoms you do, many that I feel most of us dealing with MS have. I understand the feeling well that as MS is attacking your body physically you have no control over your fate. And understand that everyone fighting this monster uses different tools and beliefs to get through each and every day. I believe in God but I believe that God helps those who help themselves. Remember together we are stronger. Reach out to one another and lend a hand to someone to tired to pick themselves up. With God's help we must fight on, MS Warriors, fight on!

[agapepilgrim]

"Unless you have walked a mile in my moccasins, don't tell me you understand." So, only we who have MS and are, also, sick and tired of being sick and tired, and on our knees ask God when is enough pain going to be enough pain to endure in my lifetime, only to be reminded on of the words of Jesus, "Father, must I drink from this cup?" "Nevertheless, Thy will be done." Then I understand my Father is more concerned about my spirit of gentleness and humility, of drinking in His Peace and His Strength, than my continual pain and fatigue. And, also I know He totally understands when I am in my home all alone and am so discourage with the pain, the fatigue, and my cognitive abilities melting away like snow in springtime, I scream out crying in anger and ask, why me, God, why me, haven't I suffered enough??? And I cry loudly until all my anger is gone once again, and I reconcile myself to my life, and thank my Father for giving me His inner peace and grace.

[cloudbear]

try medical cannabis

[CynthiaS in reply to cloudbear]

My pain relief 🌴🌴🌴🌴🌈✌ God made and given!!! Organic in Nevada.

[Lisacpa]

Not where I live. There isn't a place anywhere near where I live, either. Otherwise, I would definitely try. 😐