Ok I am mad at the pain scale the DC. uses. I was ask yesterday to talk about my pain. Ok. I live with a pain level of 6 to 8 all the time. But then I get attacks that are off any scale that I know. That all I know to call them. They attack my body in was I have never knew it could be hurt. The first is what I call lighting, I shoots though my body over and over. To me it is like a bolt of lighting hitting you. The second I call wave of pain. It is in one spot but its like waves and the beach, in and out. It also varies in the amount of pain. One time it is not to bad, the next wave puts you on the floor. Then back to not as strong. The last one is the one I am scared of. I am so afraid of it, It is like hot claws ripping me apart from the inside. I don't know how to Handle it. No I know I cant handle it. It is to much for me and if it goes on for long I am on the floor crying. How can I, we put that into a scale of 1 to 10. In my thinking the lighting is 15, the waves can go up to 25, and have know way to tell them how bad the burning claws are. Is it just me that feels this way?
No, not just you at all, Keith. Not at all.
First off, have you talked to your doctor about the three different types of pain and the insane levels of pain that you're experiencing? I'm not a medical person but here are a few questions i have: could any of it be related to the awful head injury you received 5 years ago? Do you have any autoimmune diseases, like Psoriatic Arthritis? I know that some of the people with autoimmune diseases have talked about pain levels up where you're experiencing them. I honestly don't know if fibro pain goes up that high or not, since I've never experienced beyond a 10. I'm hoping others will weigh in and let you know because your suffering sounds absolutely AWFUL.
Types of pain you experience: lightening jolts. I get a mild version of this in my left foot. SK referred to it as neuropathy.
Crashing waves of pain - yep, get it all of the time, and it's the worst kind for me but nowhere near your levels. At it's worst, all I can do is lie on the couch, not daring to move, breath, think or even sleep.
Hot claws, - no way, have never had anything so insidious. I think I've heard other people talk about hot pain inside either on this board or Psoriatic Arthritis board. You might want to post the question there too.
I'm so sorry that your pain level is off the charts like that, Keith. I really think you need to talk to your doctor about it, if you haven't already. Have you seen a rheumatologist? Have autoimmune diseases been ruled out? I know that fibro sufferers often times go on to develop autoimmune diseases. I'm wondering if that could be at play here? I just don't know.
Just went onto Psoriatic Arthritis board on this site and found a thread about the feeling of electrical jolts in the head, Keith. As I said, might be worth going over there to look for some of these pains if others here don't experience them.
My sympathies and prayers for you. I just go up to burning knives and insane aching/pulling. Ask you doctor for stronger meds. Try not to do things that cause the pain to increase. I'm going thru a crashing fatigue phase. I lay down and can hardly breath because it takes too much energy. It gets very existential. I watch spiders crawl on the wall and wonder if they're better off than me.
Hope you find relief soon, and I get a variety of pain levels through out a day, depends on how busy I am. I'm like a walking stiff..LOL. But I do feel a sensation that makes me think that I have electricity going through me. And recently I had an EMG done to see if the pain in my forearms and wrists and hands was corpal tunnel. That test only aggravated my fibro, and well the electrical stimulation was a duplicate feeling of pain that I experience very often. So yes if electricity feels like it did with that test, and that was a non life threating dose of electricity going through me, then I should find out how much juice they used for that test, because the pain that was shooting through me was more than a ten on the pain scale. When they finished the pain was about a ten. And what made me wonder how much juice they did use is that the electrical wave shot across my upper body and I was literally being jolted hard enough that my other arm and both legs would lift off the table. I thought I was going to fall off the table. LOL, that was not good for my fibro, and my head got so fogged up, and it was exhausting, Then I had to drive home. Hope I don't need anymore of that.
I am also going to my doctor next week to ask more questions about the Hashimoto's Disease. I have Hypothyroidism and everything I read about the thyroid, Hashimoto's disease is usually the culprate, I want to see if my doctor will have me tested for it, and lymes disease too. There are times when I feel like I may have lupus too. Do you get bone chilling cold on days when it is not very cold?
Keep the sun shining :-)
Audrey
Not in the least I hurt like this some what reguarly for the most part. At least for me i stopped using numbers I started using colors to signify the level of hurt Im at I really think they need to make a different chart for those who are like us, its unfair to stick to the happy faces because i wake up at a 6-8 daily. Ive felt the Lightning bolt it stands all your nerves on end and the hurt is bad enough without knowing its not gonna let up anytime soon and that you just have to lay there and wait for your brain to get tired of being pissed at you. the wave is the one I have the most often i hate this one the most because theres no such thing as bracing and embracing this one the pain isnt consistent enough to let you function just consistent enough to let you know that its got you good. As for the hot Claws I havent felt my insides being ripped apart ive felt a "hot poker" being punched through my chest or my abdomen or when it tries to be cute in one spot and out another it feels like im a voodoo doll someones sticking hot pins in but ive never experienced my insides being ripped apart and for that reason I think that you need to see your doctor and request a visit with a specialist who can give you definite answers and effective treatment no one deserves a life in pain and theres gotta be something for us even if its to bring it down to a more tolerable level
Keith, I am so sorry you are in so much pain. I understand that the pain scale is really useless to most people. And unfortunately as a nurse I know that if anyone says they hurt more than a 5 and are not increased blood pressure or pulse most dr and nurses just blow you off. Pain is very subjective and medical professionals are trained that it is how the patient relates the pain not what the dr or nurse thinks it should be. But unfortunately drug addicts have really done everyone a disservice because most dr and nurses think everyone is a drug seeker. So getting meds you need is a battle for the most part. But I agree with some of the others you need to let the dr know that first off you are not seeking and yes break the pain into different types as suggested. Nerve pain is very hard to treat and it is very painful. Again i am sorry you are in pain. I will keep you in my thoughts.