Seriously...is this for real or a very bad dream?

[Amore55]

I have always prided myself on being able to endure pain, after all I have borne eight children. But this monster is simply more than I can bear. I do not know how those of you with the same all-consuming, exhausting, never ending 10+ level of pain that I have do it. How do you cope? Some days I am so close to ending it all just to get out of pain. But I do not believe suicide is ever the answer to any problem. I could never hurt my sweetheart, children and grandchildren like that. I appreciate you letting me vent again, it’s just that I feel at my wit’s end with this pain. I see my neuro on the 16th, mri on the 14th. Very anxious for the results. I love and appreciate all of you. Kelly xx

[Fancy1959]

Amore55, it's Fancy1959. Kelly I can't Imagine what you live with Stan and day out. You know what a tough, Brave and unbelievable strong woman you are. You are definitely one of my Idols in Mentor and I need you more than you will ever know. Why don't you call your neurologist and see if you can get the appointment in the MRI moved up? Tell him what's up and maybe they can work you in quicker. Secondly have you ever gone to just a pain management clinic? At this point what do you have to lose trying to get their opinion in to see what they can do to help. I think of you more than you can ever realize and I always wonder how your pain is and how you are coping with it. You know how to reach me in anytime you need to talk simply give me a shout. I wish I could be there in person to offer you the support you need right now but no I am reaching through this Electronic Connection in grabbing you by the hand and I will not let go. Just need to let me know what I can do and I'll do it as well and it's promptly as I can. Did you feel it? Did you feel the squeeze I just did on your fingertips and the hug I just wrapped around you and it you cocooned in? I am so lucky that I don't have to experience any type of chronic pain due to my MS. It doesn't seem fair that you have to be burdened with such as severe load of pain. I don't see why I five or six of us could share part of it with you and make it bearable for all involved. But then we know the monster does as the monster pleases and doesn't cooperate with us more than he ever has to! Many prayers and positive thoughts are also headed your way. Let me know if we need to talk more often. Just drop me a note and we'll set it up if that will help you get through your pain filled days. Please keep in touch and until we speak again do everything that makes you happy as much as possible and get that wonderful husband of yours to set and gently massage and soothe your back. If that doesn't make you relax and take some of the pain away I don't know what will........💕

[Amore55 in reply to Fancy1959]

Fancy1959 I do see a pain specialist, but nothing is working. I see him every two months and when I see him in December I am going to have a good talk with him about ANY other pain control options. He is a great doc, I have been with him for six years, so we have become friends. Thank you SO much for your love and friendship, it means more than you could ever know. And I know that you are having a rough time too. You are always in my prayers, truly. I love you dear friend. Kelly xx

[lemtouni in reply to Fancy1959]

I am sorry to learn about your pain. May the universe and your acceptance help manahe it.Excuse me to suggest accuponcture, ozone therapy. and emotional freedom techniques.

These are known to help with pain

Yours with acceptance

[Amore55 in reply to lemtouni]

I wrote that 4 years ago, since then my ms has greatly improved! I no longer suffer from great pain. I am very grateful for this!

[Humbrd in reply to Amore55]

👍

[erash]

Amore55 praying you get some relief.

Should you consider going to the ER if you're having that much pain?

[Amore55 in reply to erash]

Erash I think I have mentioned before that in my real life I was a Clinical Supervisor at an addiction clinic. I saw countless patients go to the er for various reasons and as soon as the docs hear that you takes opiates for any reason they treat you as a drug seeking bum. I DID go once for my pain about seven years ago, it was nothing in hindsight to now, but anyway, as soon as my husband told them I take OxyContin they basically booted me out with no help. I was angry to be treated like some addict, and my feelings were hurt too. But believe me, we think about it all the time. Would they help me? Thank you for your suggestion and your prayers. I hate to sound like I am whining, but I really do need to vent about it. Kelly xx

[Midgey_Midge06 in reply to Amore55]

U so need to vent or wud go crazy. Trust me i know

[erash in reply to Amore55]

Amore55

Venting is allowed! And yes, the ER can be difficult.

10 yrs ago my TN pain was so bad that I lost 30lbs.. I had my hubby take me to the ER bc I needed to be admitted to determine how my pain could be treated and to get IVs. The ER wanted to give me a rx for Lyrica and send me home. I refused to leave until the pain was controlled. Ended up being admitted, IV Keppra and an MRI that was initially read as normal (again). Pain controlled, I was sent home. 2 days later my PCP called to say the MRI was reread "MS" with many! Lesions.

Just wish you can get relief but I understand your reluctance to go to the ER 🙁

[Doubled51 in reply to Amore55]

Amore55 Kelly I know exactly what your talking about. Having been in pain management and an iPod user for over 10 years I know that the meds don't do enough to take away the pain anymore. The few that abuse cause pain and heartbreak for us that need them. I to have been treated as a drug seeker in the er on more than one occasion. Last time in April when I had my first MS attack. The opiods don't help my neck and shoulder pain from MS and neither does the Gabapentin anymore. From one chronic pain sufferer to another Hang in there my friend. Just remember there will be no pain in heaven. Praying you find some relief soon.

God bless you my friend. Always remember what I said about needing prayer.

Donnie

[SueAB]

Amore55 , Vent as much as you want - you are having a REALLY hard time lately! Hopefully, your neuro will give you something stronger for your pain! In the meantime - DEGU - "Don't Ever Give Up"!

[Kenu]

I have pins and needles in my feet and hands all the time with pain. Also will have a sharp hot dagger off and on in my right foot. Along with two reptured disks, herniated disk and four bone spurs. Went to pain management doctor 👨🏼‍⚕️ and decided on a pain pump. Best thing I have ever done. Helps with back, feet, and hand pain. Reducing it from a ten to a bearable 4-5. Might be worth a try 👍🙏 is part of it also. It’s like AA, NA, and MS,”One Day at a Time “.

[Amore55 in reply to Kenu]

Kenu thank you for a great suggestion. I am going to suggest that to my pain doc. I am so sorry you have such pain. You will be in my prayers, God bless. Love, Kelly xx

[kdali]

I'm so sorry! Have you had a pain management consult?

[Nom_De_Plume]

Aw, Kelly! I Don’t understand why you are still without relief. Do they not have anything they can give to you?? I know that this sounds impossibly naïve, but I just don’t understand why there isn’t more they can do. Is it that you must wait to be seen before other options are considered? Suicide is never the answer. You have far too much dignity for that. Still, it must be absolutely nerve-racking to be enduring this as you have been. 😓. It certainly must feel like a bad dream!!

Please help us to understand when you’re able, and when it is not too taxing to do so.

Wish I could at least hold your hand as you endure this! 😞

xxxooo Lisa

[Amore55 in reply to Nom_De_Plume]

Nom_De_Plume it really IS unreal, isn’t it that my pain doc can’t find something to work on this level of pain. Maybe if it was just one part of my body it would be easier, but it is my complete, whole body, 24/7. Thank you for your kind words, I can feel you holding my hand across the miles in friendship. You are so very kind. ☺️ Take good care of yourself, Lisa. Love, Kelly xx

[Miriade]

Hi Amore55, I suggest you call your doctor to go there to get tour apoitment and MRI with results imediately.Pain is subjective,nobody can't see, but in your case is very clear that something is pinched in your root main nervous causing this enormous pain. This has to be solved asap.Not to be considered as a person addicted to pain killer as is what they think in most of the patients. You have to call and request help and evaluation of your case explaining that is not usual and not related to addicted to medication. They will considered better to see you. You already had other problems before

Something had dislocated and its pressing , pinching main nervous. Go to your Neurologist to ask for better review of your strong pain.

[Midgey_Midge06 in reply to Miriade]

I totally agree. When i first started getting MS hug pain - i wud involuntarily scream every time i moved the pain was so bad. Not just for an hour or even a day but months at a time. When i went to the ER the nurses treated me like crap and the doc said they cudnt treat me. I did have a kidney infection the one time but i called my neuro, told the nurse what was happening and they got me on baclofen which helped manage the spasms and of course the pain.

I have so been where u r and the best thing to do is reach out for help from ur doctor. Something is terribly wrong and its more than this monster. Ur body is telling u need help. Time to listen 😘💜💜

[Amore55 in reply to Midgey_Midge06]

Midgey_Midge06 you are so right. My body is screaming for help. I think I tend to blame everything on ms, but maybe something else is going on. I just do not know, but will work to get some help. Thank you for your smart advice and your kind words. God bless. Love, Kelly xx

[Midgey_Midge06 in reply to Amore55]

U r so welcome.

I was using alcohol to numb my pain. As u can imagine wen i went to the ER they totally didnt take me seriously. Thank god the doc there had me pee in a cup cuz i had no idea i was peeing blood. How i missed that i dunno but ur MS cud be flaring on TOP of other symptoms making it that much more painful.

[Miriade in reply to Midgey_Midge06]

Hi Midgey, seems like when we are out of control at ER where comes people from all over in all condition s, screaming too much, they "turn the filters in their ears against weird noises" for dont disturbing theirs daily shift. This is why we have to reach who we know, that really know our situation and behavior to identify when is serious and take care of the patient. Also go to the hospital that could have connection with your doctor as well to ger access to the medical records easier.

[Midgey_Midge06 in reply to Miriade]

Totally agree with u

[Amore55 in reply to Miriade]

Miriade thank you for your great, wise words. You always have good advice and I thank you for it. I will be acting on it. God bless. Love, Kelly xx

[Miriade in reply to Amore55]

Hope you can be proactive thimking in the way the doctors thinking about the patients. Then tou will get better assistance clear the point of view and get your situation taking care in the right way. Just complaining to the doctors does not work, believe me, it has to me more rational to make sense to them.

[greaterexp]

Amore55 , I don’t know how you deal with your pain, but I couldn’t agree more with every one who encourages you to be that “squeaky wheel” and get some help immediately. Isn’t it time to just go to ER for some help?

I’m praying you get some help now, as no one should have to deal with this when there are options. You have so many praying for you for relief and clear direction about what to do and where to go. Please hold on, but take action.

We all love you.

[Midgey_Midge06]

When u r in that nuch pain - its all u can see.

Listen to the people that love u and know u need help.

Please let us know that u have gone to the ER or got in with neuro ASAP 💜💜💜💜

[goatgal]

amore55 my heart aches for you. I am holding you in my thoughts.

[Momjules]

Hello! I also have 24/7 pain. I have been to my Nuero and the er. I have had four nerve blocks. Only my dialid and disapam help. Even then not 100 percent. It’s my way of life and I wait for the end. I also have heart failure and diabetes. My heart attack at 45 was the beginning of the end of my normal life. I hope much better outcomes for you. Good luck!!

[Amore55 in reply to Momjules]

Momjules I am so very sorry that you also have such pain. You will be in my prayers. I can’t imagine having a heart attack at 45. You are very brave. You say you wait for the ene. I am only 56 and have so many things I want to do, but I totally understand what you mean. I believe when we pass we are reunited with our loved ones. I would love to see my two grand babies who passed as infants, my parents, two brothers and all the others. Just know that now you truly will be in my thoughts each day. Love you, Kelly xx

[MarkUpnorth]

I understand the pain. Still have it without management. Have years and years collection of meds that didn't help. Have a whole file cabinet full of empty or only partially used scripts. None helped. Many caused horrid side effects. My pain sets in every evening. Keep me a zombie from lack of sleep. Found euphoric relief from non psychoactive CBD cannabis. If your state allows it, worth checking into. But, different strains for different people & different symptoms. Vaping offers fast instantaneous relief without all the problems of smoking. I couldn't smoke it if I wanted, too harsh. Worked for me, where conventional meds didn't.

[WAshingtongirl]

Amore55 , my heart goes out to you. I am praying for you and your neuro. I hope and pray he has an answer for you. And if the pain isn't MS-related, that you have some new direction and a plan for long-term relief. 💕

[Amore55]

Tutu as always here you are for me! My husband and I talked that perhaps something else is going on, but of course, all is attributed to MS. I will keep you posted. Love you, Kelly xx

[Momjules]

Amore55

Thank you and everyone else for your kind words and thoughts and prayers.

I try to go on every day and try to function while in pain.

Nights are the worst. The day just makes your body tire out and so the pain intensifies. There are others worse off and my prayers go to each of these people.

My doctor says I’m lucky I’m still walking so I walk my dog often.

Thank you for the uplift to my day!!

My mom and her sister both had this ms so I believe it’s in the bloodline of certain families.

[Amore55]

Momjules That is amazing hat your mom and aunt both had ms. I know of one other person whose mom had ms and she got it also. What kind of doggie do you have? And what’s it’s name? (I just love dogs). So great you can walk yours everyday! Can’t wait to hear. Love, Kelly xx