I was referred to this forum by a member of another forum i'm with.

She wanted me to help the folks here, like the ones ive been helping for 2 years now on the other forum.

I believe that every person that comes looking for some type of answer to their question should get some type of answer.

I've been reading some of the threads and all about the mods and admins here.

This seams like a friendly knowledgeable place to learn and vent.

I look forward to chatting in the chat room as that is one thing ive been looking for, for some time now.

A little bit about me:

I have Lupus of the skin, severe Fibromyalgia, SFN, 2 arthritis locations in my back and one in my neck, spasmatic, Thyroid issues and a severe reaction to all metals.

I have spent last year $100k on doctors and testing every organ in my body.
I have learned many things with that time and money i have spent. I would like to pass on as much as i can.

I've been to a naturalpathic doctor for all of this as well. one of the best that $$$ can buy.

I had, to me, a very long visit with her. mostly she read the medical records i handed her.

She called my wife and I into her office as she was very understanding of my metal reaction. here is what she told us.

First i'd like to give you your money back for today's visit. she handed me a hand written check.

I have examined you and read through all of the diagnosis you were given. I agree with all of them. I understand you have given up on the medical industry and want to try all natural treatment.

You have five of the most painful things with no cures, that any person can have.

At this point i can only reccomend that you go to pain mgt and get Morphine for the pain. As a natural doctor i cant prescribe this med. i have never before recommended this treatment to a patient. I'm sorry. your only hope for a better Quiaility of life is pain medication.

it was so nice to see a doctor that is honest and not willing to take my money for something that wont help me.

My neurologist, R/A, GP's,heart doctor and allergists all told me the same words. Go to pain mgt there is nothing that can be done for you except try to relieve some of your pain.

So now im with pain mgt for going on 3 years.

Im on two kinds of Morphine 100 mg a day a very low dose, Gabapenten 1800 mg a day. down from 3600 mg a day, thyroid med, and spray under your tongue Fentenyal (10,200 mcg a day,$20,000 per month.) this med can kill you at any dose, any time. this med is for folks that have cancer and are in the later stages of it. the doctor reviewed this med with my wife and I before we started it.

We have come to terms with the dangers of all the meds.
the pain levels on these meds are an average of 4-8 all day and night.
i cry most every day 3-6 times.

with out the meds my pain levels are off the charts.

we look at the meds like this:

If they kill me then the pain and suffering is over.
if they are helping, keep taking them.
if they are not helping, stop taking them.

Read the med guides, refill your meds on time, and watch out for doctors having pissing contests as they will cause you to go through withdrawals.
Take control of your treatment plan and make informed decisions.

I keep a daily log book of all my meds,reactions, how long it takes a med to take affect and when it stops working, diet and as much information as i can.

I recommend this to all of you folks. if you need help with this, please PM me and i will give you what is needed to do it.

Im here to help as many of you as i can. im here to listen when you vent, support you when you are down and depressed. i understand your pain.

my shoulders are big and they are here for you to use as well.

I posted a thread on the Metal reactions i have and i'm hoping to get some help with that here too.

Feel free to friend me and PM me if you need to talk in private.

Hi, you made it over here, hope it works ok for you...I didn't realize you were in so much pain, I'm in pain, but it's manageable with what I take and all my supps...

Every time I hear the Prolo MD on my radio here, he is forever saying, less pain meds are best, more pain meds cause more pain. Something about the pain receptors.

Welcome cmetryme.

Caroline,
I did not know you were on this forum as well. i'm so glad you are trying to help others and learning as much as you can. knowledge is your best tool.

thanks for caring.

Yes im in a lot of pain and nothing or no one can help me to stop it.
Pain mgt is helping and my only choice.

I push on because i want to see my wife and son everyday i can.
some days its very hard to do that. a little venting and helping folks helps me to cope.

I look forward to reading thee post here too.

of course if you need to chat with me im here for you.

Thanks for replying to my post.

I've questioned the more pain drugs and less pain.

But there is so much info out there on taking more pain meds is causing us more pain. Just what we are not wanting, but ending up with.

I find higher dosing on MSM powder in clean water thru the day helps calm pain and so does pain rx herbal supp help me. I take ibuprofen 2 times per day.

Just HATE to think that taking more pain meds is helping and finding the opposite.

Hi cmetryme,

Nice of you to join us and offer your help and support, but remember that is reciprocal - it is what our Community does best.

You have a long list of painful issues and the meds to go with them. Myself, I have been under a brilliant PM Team for 8 years, have been suffering severe Chronic Pain for 25 and previous damage a dozen or so years before.

For my Sins I am afflicted with Chronic Cluster Headaches and TN, my full Bio details just about everything - I am learning to share here.

As for meds. Lidocaine Infusions, Ketamine, Morphine, Tramadol, Arcoxia and Topiramate take pain from 9 to 4-5 (unless Clusters strike, then 15). Mirtazapine for Deep Depression. Add sundry heart and GI meds and we should set up a pharmacy together.

Looking forward to getting to know you.

Dave.

Hello and welcome, happy to see you have come to be with us, it a great place to be. As you can see we have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Hope you are not in a part of Texas getting flooded. I live out in south plains and we are surviving, but getting alot of rain. Hope you are living through this.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Thanks for all the replies and wonderful welcome!

since i was a small child i have had severe reactions to over the counter meds and some prescribed meds. As i get older the reactions are worse.

I will get a rash on my face and then pass out from the meds right where i stand after taking it. (Epinephrine is put in most meds to give it shelf live)

I dont mean, go to sleep. i mean pass out. then wake up anywhere between 5 minutes and 3 hours. hurting because i hit the ground so hard. i have broken my ribs now three times doing that. i now sit in a bed when i try a new med.

There are only two meds for lupus and i'm allergic to both meds. so only pain mgt.

I'm allergic to over 30 blood pressure meds. so only pain mgt.

I'm Allergic to Epinephrine.
yes i know your body produces it. the meds they give you when your having a heart attack, it's not the same, its man made. unless they have a sheep in the room and they take it from the sheep and place it right away into you.
yes they do do that.

I have a heart murmur.(wont kill me)

I have been told by three doctors, If my heart goes out of beat and it wont come back into beat, go to the ER. (FYI, lupus removes the oxygen from the blood and will make my heart go out of beat) i keep an oxygen machine for when that happens to me.

They will use the Epinephrine to try to change my heart beat. DON'T let them use it, if you can. With the large amount they will use, it will make my heart explode instantly. You may not be able to stop them. as they are using that shot to them, it is to save my life. They will kill you, so last resort is go to the ER.

They(doctors and nurses) have taken an Oath(i laugh when i say that as they use that when they want to and ignore it when they want to.) to use it no matter what i tell them. so the ER really is last resort.

I experienced this first hand before a surgery i had. Even though I had a DNR with me. That dont work in the hospital folks, just at home or in public places.

Just before i went out from the Anastasia, this nurse told me im going to use the Epinephrine if we have too.
I grabbed his arm. had him come in close and told him. remember when i came in here and you all introduced yourselves to my wife?
well, she wrote down every ones name and if you do plan to use it.
she is going to sue each of you personally for killing me as you were told not to use it.

I Wont even go into the stainless steel in a hospital and the passing out within 20 feet of it.

If i do find a med that wont kill me or make me get a rash or pass out right where i stand is rare. it's a very scary thing to try a new med not knowing what it will do to me. im just glad that the meds i'm on are doing something.
not working to the full effect but at least they are giving some relief.

Once again, i want to tell you all, to read the med guides and you decide for yourself what is an exceptable risk. your doctor gave you that med because he/she thought the benefit out weighed the side effects. (not based on his kickback for the med company at all..lol)

Make informed decisions folks. it's to late to hear your doctor say im sorry i didn't know the med would do that as you sit in the hospital bed.

Keep living The quaility of life that helps you cope with the world.

Your doctors are just guessing and your guess is better than theirs in most cases. you know your body and the doctor doesn't.

You are in control of your treatment plan. Don't just let a doctor guess on his/her own about what is going to work for you. Ask questions before you take a drug or any kinds of tests.

I lost my eye site in my left eye due to a doctor telling me i need to take lyrica for fibromyalgia. it is a side effect. i didnt read the med guide until it was to late. My own fault.

I hope this makes you folks understand that i have nothing that can be done by anymore doctors. i've only got pain meds that may kill me or take my other eye.

May none of you ever have to experience my life.

you can get though each day. i know how hard it is and i feel your pain.
You can do this with the help from folks that care.

I can only help others now, so thats why i do this forum stuff.

May you all have many low pain days ahead of you.