[invisable]

When you people use the work "Pain" would you please describe the pain?

[Feel the Burn]

Burning, Numbness, boring bone pain, relentless , shocking type, spasms, sensory stuff, things feel cold when there not, a breeze brings on intense pain to the part of the body that the breeze is blowing on, or it might send the whole body into spasms, for everyone its different,, some find it tolerable and others are ready to take the bridge becasue it never lets up,, you go to bed with it and wake up with it,,and each day brings its on challenges

[malawigirl08]

Originally Posted by Feel the Burn

Burning, Numbness, boring bone pain, relentless , shocking type, spasms, sensory stuff, things feel cold when there not, a breeze brings on intense pain to the part of the body that the breeze is blowing on, or it might send the whole body into spasms, for everyone its different,, some find it tolerable and others are ready to take the bridge becasue it never lets up,, you go to bed with it and wake up with it,,and each day brings its on challenges

So eloquently put, this describes me to perfection although my pain is confined to the lower calves and feet and breezes dont bother me - everything else describes me - I hate waking in the morning and for a split second you dont feel it and then it comes crashing down on you BANG - it has started again! Sure this disease is horrible....

[dahlek]

Let's stick these limbs in boiling oil! yep..
Let's plug them into this outlet! yep..
Let's stick them into the freezer! yep..
Let's suck the bone marrow out of them SLOWLY! yep..
Let's go find the saw in the basement and cut it out? - nope, can't get down the stairs w/o falling.
At the Neuro's office: Close your eyes and stand! - Only if you can catch me! Oops? Ya didn't!
There are meds that can help, and supplements that help too. But, be careful with each and every one of them! Go slowly and learn about the meds etc. They come with some consequences such as 'bone loss' for the anti-seizure meds... [been there, done that]
Best thing is to get your diet and metabolism in it's best shape? And try and get off as many meds as you can survive with. If the pain is such you can't do complete sentences? Problem..try out different meds. If the pain is the same when on the meds? Try out different options.
Be sure about your PAIN! here is a pain scale to help you 'try' to be objective:
http://en.wikipedia.org/wiki/McGill_Pain_Questionnaire Go down and look at the 'pain survey' - it asks questions about each type of pain in detail...
First get that pain in control...then diagnosed properly ... then deal with whether being on pain meds is worth it or not. Rite now? I have an immune therapy for my immune-mediated neuropathy[ies] and I try to only take pain meds WHEN ABSOLUTELY POSITIVELY NEEDED! I consider myself lucky? Tho I am in pain always. But it's not disabling to the point where I can't type a complete sentence! Also? Be aware that pain meds? Don't always take away ALL the pain? You're still gonna feel something. But, if your meds make you so muzzy you don't care? It's a warning bell for me, don't know about you.
Hope and hugs-!!! - j

[rose_thorn98]

Burning, prickly, itchy, electric shocks, deep muscle ache, deep bone pain, feels like someone poured gas on me and set me on fire. Muscle twitches too. All this is all over body, from head to toes. But worse on face and feet. Pain is 24/7. With no meds pain level is 9, with 150 mg. Lyrica a day pain is 2-4. I have yet to have a full relief with meds....but still hoping.

My opinion is that you should take the meds you need to get enough relief to live and function in a normal life. If you get dependant upon them, so what, because what kind of normal life can we lead if we are a level 9 pain all the time. That is not a functional life. Nobody can be a good person, wife, husband, mother, employee, etc...if they are in so much pain they can't function. But of course, be aware of side effects, and remember that not everyone get the same side effects. So we all must do what is best for us, and no guilt about it.

[invisable]

Originally Posted by rose_thorn98

Burning, prickly, itchy, electric shocks, deep muscle ache, deep bone pain, feels like someone poured gas on me and set me on fire. Muscle twitches too. All this is all over body, from head to toes. But worse on face and feet. Pain is 24/7. With no meds pain level is 9, with 150 mg. Lyrica a day pain is 2-4. I have yet to have a full relief with meds....but still hoping.

My opinion is that you should take the meds you need to get enough relief to live and function in a normal life. If you get dependant upon them, so what, because what kind of normal life can we lead if we are a level 9 pain all the time. That is not a functional life. Nobody can be a good person, wife, husband, mother, employee, etc...if they are in so much pain they can't function. But of course, be aware of side effects, and remember that not everyone get the same side effects. So we all must do what is best for us, and no guilt about it.

I am not at all afraid of getting dependent on a drug, I just said those words to someone the other day. Quality of life is much more important, I want to be and feel myself as much as I can.

I have everything you named except muscle and bone pain. I do get the twitches, but not as much as I used to. I also get a feeling like water is being splashed on me. Mine too is every second of the day, I believe it must stop when I sleep though, I am a light sleeper and I am not awakened by any sensations. With the 1200 mg. of Gabapentin instead of a sensation every second of the day, I feel about 20-25 a day. A big difference! The side effect is weight gain for me (why couldn't it be weight loss, I may have been happy about this mystery disease.......lol!)

[rose_thorn98]

Originally Posted by invisable

I am not at all afraid of getting dependent on a drug, I just said those words to someone the other day. Quality of life is much more important, I want to be and feel myself as much as I can.

I have everything you named except muscle and bone pain. I do get the twitches, but not as much as I used to. I also get a feeling like water is being splashed on me. Mine too is every second of the day, I believe it must stop when I sleep though, I am a light sleeper and I am not awakened by any sensations. With the 1200 mg. of Gabapentin instead of a sensation every second of the day, I feel about 20-25 a day. A big difference! The side effect is weight gain for me (why couldn't it be weight loss, I may have been happy about this mystery disease.......lol!)

My husband says better to fat and happy than skinny and miserable. I think he's right!

[nide44]

Mankoski Pain Scale
Copyright © 1995, 1996, 1997 Andrea Mankoski. All rights reserved.
Right to copy with attribution freely granted.

0-- Pain Free No medication needed.

1-- Very minor annoyance - occasional minor twinges. No medication needed.

2-- Minor annoyance - occasional strong twinges. No medication needed.

3-- Annoying enough to be distracting. Mild painkillers are effective. (Aspirin, Ibuprofen.)

4 --Can be ignored if you are really involved in your work, but still distracting.
Mild painkillers relieve pain for 3-4 hours.

5-- Can't be ignored for more than 30 minutes.
Mild painkillers reduce pain for 3-4 hours.

6-- Can't be ignored for any length of time, but you can still go to work and participate in social activities.
Stronger painkillers (Codeine, Vicodin) reduce pain for 3-4 hours.

7-- Makes it difficult to concentrate, interferes with sleep You can still function with effort.
Stronger painkillers are only partially effective.
Strongest painkillers relieve pain (Oxycontin, Morphine)

8-- Physical activity severely limited. You can read and converse with effort.
Nausea and dizziness set in as factors of pain.
Stronger painkillers are minimally effective.
Strongest painkillers reduce pain for 3-4 hours.

9-- Unable to speak. Crying out or moaning uncontrollably - near delirium.
Strongest painkillers are only partially effective.

10-- Unconscious. Pain makes you pass out. Strongest painkillers are only partially effective.

[mrsD]

The Mankoski Pain Scale is the most commonly used one:
Here is a link to it...

http://www.wemsi.org/painscale.html

I think pain is a very subjective thing. Some people can withstand alot of pain, and others cannot.

One can learn to dissociate some pain, through autohypnosis and relaxation techniques. Some research is being done with this type of therapy so that dependence on drugs can be less.

There is a neuronal pathway in the brain that processes pain. And evidence is mounting that it becomes a LEARNED process like other things we learn. So if one allows pain to become your master, it may never go away centrally. The example given is the phantom pain amputees feel, which continues in the brain after the limb is gone. So it is very important NOT to dwell on discomforts, to shift attention and focus elsewhere, so the pain loop does not become permanent.

This is one reason I prefer patches and local pain interventions because stopping the signal at the source seems to prevent future chronic issues. The Lidoderm patches work this way, as well as topical RX creams compounded or OTC like Biofreeze.

[cyclelops]

I never had a lot of burning. Maybe the bottoms of my feet, back when I was running and thought it was due to that. I have bone pain, and muscle pain. I feel like I may burst out of my skin....like the inner part of me is too big for the outer part of me. I am numb in spots. I do have a muscle like pain or soft tissue pain. I liken my pain to broken bones...like walking on broken foot bones, or having a broken back bone.

Most of my issues are autonomic, with a whole different kind of pain. I can have severe cramping in my intestines which causes me to pass out. (vasovagal with bm) I never know when this will hit....it can come within hours of my just having had my 'daily' since it is unrelated to this.

I feel like I swallowed a bowling ball. I have esophageal spasms that feel like a 'heart attack'. I have nausea and loss of appetite a lot.

I am dizzy, can lose balance, have visual issues, and sicca.

I have a lot of heart palpitations and shortness of breath, and presyncope.

Needless to say, fatigue with the inability to initiate sleep.

I have restless leg.

As was said, pain is relative. The pain I do feel, is 6 to 8, on a daily basis...it is really a bear to move at all....but this is life....it isn't going to change, so I have to use my days as I see fit and fight this miserable pain. Some days are 'good' relatively speaking....which means I can accomplish something despite pain....other days, are not so good, which means I get nothing done but eat pain pills.

Meds designed to make 'things better' can often make things worse. I must be a good part Neanderthal, since I have a lot of issues with drugs, either side effects or them not working well. For example, Zofran, a widely used and thought to be well tolerated drug for nausea, sent me into 8 hours of hideous chorea like dystonia. (Think restless leg syndrome on steroids!!)

Neuropathy can be burning pain of the extremities, but it can be oh, so much more!