I just don't know what to do any more! For over three weeks I have been battling severe fatigue, joint pain and headaches! My Mom says we go through this every year because I a rare form of MS. I don't remember it ever being this bad or prolonged! I can't sleep at night because of the pain and the fact that I am having to nap during the day just to get by. My T. says if I don't nap during the day, my sleep would improve at night. Right now I don't believe that because it is also the pain that keeps me up at night. I finally broke down and called my primary doctor for some pain relief, but I have to wait till tomorrow for her to call back because she wasn't in the office today. I did try one pain pill that I had left over from some dental surgery and that has NOT helped at all! I am at my wits end and my family doesn't think it is a big deal! Thanks for listening!

[RunningEagleRuns]

Originally Posted by kbear69

I just don't know what to do any more! For over three weeks I have been battling severe fatigue, joint pain and headaches! My Mom says we go through this every year because I a rare form of MS. I don't remember it ever being this bad or prolonged! I can't sleep at night because of the pain and the fact that I am having to nap during the day just to get by. My T. says if I don't nap during the day, my sleep would improve at night. Right now I don't believe that because it is also the pain that keeps me up at night. I finally broke down and called my primary doctor for some pain relief, but I have to wait till tomorrow for her to call back because she wasn't in the office today. I did try one pain pill that I had left over from some dental surgery and that has NOT helped at all! I am at my wits end and my family doesn't think it is a big deal! Thanks for listening!

Hope it gets better!

[Leed]

Bless your heart ~ I know how awful chronic pain can be. I've been suffering from it for 26 years, and there are times I have trouble just getting up from a chair.

I find it HORRIBLE that your family thinks it's "no big deal!!!" Of COURSE it's a big deal!! The fact that you're in pain is IMPORTANT and it makes me so darn mad that people don't believe you! What makes me even madder is that many times the doctors don't believe us, and think we're just drug seeking. That couldn't be further from the truth!

I pray that you get the attention that you deserve. It's bad enough that you have MS, but to have chronic pain on top of it is terrible. Did your doctor order any medication for you? I pray that he did, as I know what it is to be in debilitating pain.

Know that you are in my prayers ~ take care and God bless. Hugs, Lee

[(JD)]

Few people realize the difference when dealing with MS pain and fatigue than with other pain and fatigue, imo.

I'm sorry your T doesn't understand. I have a pain & stress management expert T (clinical psychologist still...) who fully understands that if I don't nap mid day, I become almost "over" tired to sleep at night! I must have a rest. It can frustrate me because I never know how long a nap I need or will take... and what impact it will have on the night's sleep...because, yes too long of a nap (like hours!) does change the night's sleep.

Have you started on any of the MS medications yet? There are plenty to try, for your type of MS...and seems like more each year. (So many medications being used off-label for others in pain originated from MS pain and fatigue research!)

There are a few of us here with MS... I don't officially have MS since I only have one lesion (not "multiple" as in Multiple Sclerosis.) And my lesion is from an injury accident... but it causes all the same symptoms of MS, neurologically as a vertebrae chews into my spinal cord (where it's caused the lesion.)

It's so hard to find what's right for you to begin with, and then to have so many telling you what the norm might be without considering your own issues...that makes it so much harder I think.

Try not to beat yourself up over what your body needs. It is what it is and you aren't causing it or at fault...and taking care of yourself...doing what you know works for you is what you have to do.

[Jewels]

I understand all too well the differences between MS pain and other aches and pains...and my pain specialist KNOWS that I know, so he doesn't try to put icing on a cake that is dry, and cracked from not enough moisture. Having MS sucks, big time. I can tell when I am over tired during the day because I get all shaky, walk to the right even though I try telling the wall to move so I won't hit it...and suffer really bad headaches. On top of that I have Fibro, CFS, DDD with Spinal Stenosis and bone spurs that are pressing into my spinal canal more and more each day...and I have arthritis, and some hard problems with my left foot that may mean the end of being able to walk...my chair sits in the corner of the dining room because my apartment is WAY TOO SMALL to allow comfortable maneuvering of the chair inside. And since I do not have a ramp to get out of my apartment, it cannot take me outside either. Walking is so painful that I try not to wear myself out much during the day. A trip to the store finds me worn out within minutes, especially if I don't find an Amigo to take me around the store. Even that gets old fast, and I am done shopping within an hour. Walking is becoming more of a luxury that I cannot afford much longer. Even my pain specialist sees it and is worried about me. I empathize with all those who have pain as their constant companion. It is not a life I would wish on my greatest enemy. But I do wish that those who scoff at others in pain would walk a mile...a single mile, in my shoes, to feel the depth and breadth of pain I have, and what I have to deal with every day, and then tell me after that mile if their attitude has changed because of it. Some will deny it, saying it didn't affect them, but most will be changed by it. For them, it will be worth walking that mile in my shoes. For those who deny it, nothing will be able to change their minds. I wish those who think we are "disabled" to see us for who we are: human beings with the same emotions, dreams and ideas that they have, who just happen to have a disability to deal with besides. Ya'll have a good night's rest, and come back tomorrow with renewed vigor in your hearts. Life isn't over til the fat lady sings...and who knows when that will be...cuz this fat lady aint singing unless she gets to rest from this pain forever...and that aint gonna be anytime soon!

Peace,

Jewels

Thanks for the support! I really appreciate it! I have tried some of the medications made specifically for MS patients, but none really worked. You see I have a very form of it called transverse myelitis. It is basically a one-time event that forms lesions on the spinal cord and blocks nerve impulses from reaching my legs. I do see my neurologist in a couple of weeks, so I am going to ask about maybe trying something to help me out (besides long-term use of pain-killers!) I also see my T this week (who is a psychologist as well, but not into the stress management or pain aspect). I also see my pdoc this week. I think I am going to ask for something to help me sleep at night. I am SO THANKFUL you understand the need to sleep in the afternoon! I only took a one-hour nap yesterday (had a party to go to) and I was exhausted when I got home. I still couldn't get to sleep and was until after midnight. I woke up this am about 6:30 ish (CST) and really was in too much pain to sleep, so I got myself up. I am still tired, so another nap is going to be needed today. Thanks for the great advice that is also VERY much appreciated!

quote=(JD);1715173]Few people realize the difference when dealing with MS pain and fatigue than with other pain and fatigue, imo.

I'm sorry your T doesn't understand. I have a pain & stress management expert T (clinical psychologist still...) who fully understands that if I don't nap mid day, I become almost "over" tired to sleep at night! I must have a rest. It can frustrate me because I never know how long a nap I need or will take... and what impact it will have on the night's sleep...because, yes too long of a nap (like hours!) does change the night's sleep.

Have you started on any of the MS medications yet? There are plenty to try, for your type of MS...and seems like more each year. (So many medications being used off-label for others in pain originated from MS pain and fatigue research!)

There are a few of us here with MS... I don't officially have MS since I only have one lesion (not "multiple" as in Multiple Sclerosis.) And my lesion is from an injury accident... but it causes all the same symptoms of MS, neurologically as a vertebrae chews into my spinal cord (where it's caused the lesion.)

It's so hard to find what's right for you to begin with, and then to have so many telling you what the norm might be without considering your own issues...that makes it so much harder I think.

Try not to beat yourself up over what your body needs. It is what it is and you aren't causing it or at fault...and taking care of yourself...doing what you know works for you is what you have to do. [/quote]

[(JD)]

(((KBear))) Ok...transverse myelitis...

My pain flares that occur from the lesion on my low spine is mainly because of inflammation of the area that impinges upon the sciatic nerve(s)...

So my main enemy (other than myself not disciplining myself to not push, pull, lift, twist, step etc!) at that time is inflammation. I can't take most medications as I'm allergic to synthetics in general.

What I'm currently trying are herbs...trying to find my own cocktail of herbs that fight inflammation so that I can either prevent it or limit it "if" and "when"...

I am finding that the various herbs for inflammation in other parts of the body are also seeming to help the low back (and why not?)

You are your own best advocate. Pain is subjective and the doctors can only go by what and how we describe the pain and what I need. (Pain med does nothing for the low back pain flare. ) Make up your own pain level chart, close to what the doctors use (but I found they all used one slightly different from the next..) with the description you give it (buzzing, numbing, sharp, etc) and perhaps what or when you experience it (like after lying in bed too long..)

Good wishes!

[Nammu]

I have spinal pain from cysts makeing there home on or near the nerves of my lower spine. I've found that warm bath with both naking soda & epsum salt works really well. I add different essential oils lavender is my favorite. I just found a really good pain specilist and it helps to have her. She understands pain and we are trying differnt ways to deal with it. I think it sad your family says it doesn't matter. Sounds like you need someone else to talk to about your pain have you tried a therapist just for you?

[bryan239]

I know that feeling when others think what you are going threw or that you are in pain isnt a big deal. I have RA and had 2 joints replaced (I have a post in Cronic Pain). It makes it even worse when a doctor doesnt believe that you are in pain. They all go off of that stupid pain scale..pretty much saying if you are not crying you are not in pain. People that have lived with pain for a very long time can tolerate it but it does not mean you dont hurt! It took me many years to find that doctor that would actually sit and listen to me and not judge me because I am young (27) and think im only looking to get "high" . It does sound like you do need someone to talk to or a support group of people that are going threw what you are. I know it makes me feel better when I can talk to and relate with others because we are dealing with the same things. You dont have to sit there and feel like you have to convince anyone that you hurt. Plus its always good to vent!