I have had more then 24 surgeries for spine, abdominal, stroke, heart, joints and eyes. I have fibromyalgia along with spinal stenosis, RA, RO and other pain related issues. It took a long time to find the right DRs and some pain control to get through the day when I am able to.

I can only suggest finding DRs who will work together using multiple modalities from meds to meditation, accupressure, accupuncture, PT and emotional therapy. Find a local support group that fits your needs and friends who will listen and understand. Follow your personal beliefs and as I always say there are others worse off then me. That may take some time to get to that understanding. I am starting a local pain support group and hope to have it together by July.  Good Luck, find the right people and you will overcome this unbearable situation, you are not alone. You can contact me at fibrofriendshelpingfriends@gmail.com for additional support if you would like too.

Rick

Hey there :)

I'm 29 and have had fibro since I can remember. It's a severe rare case consisting of extreme constant pain complicated by surgery badness- I understand what severe pain can do to the brain and soul, in other words.  Don't want to waste time talking about me.

Sleeping through the pain is nothing to be ashamed of, but you are right to be frustrated because it's not *enough* to sleep. When you can't sleep and the pain is horrible.. well that's another matter. I am going to make a list of things for you to think/try - I'm certainly no doctor but I have tried many things and I have been to that "Giving up" place often - but a lot less now. People will "worry" or criticise you for it, including doctors.. but when you are at the end of your line - it's a much better choice to sleep thru it than the dark alternative.

Medication: If you can get them:

First, Fentanyl patch / 3 days. If you haven't tried it, talk to your doctor. All over pain and moderate to severe pain. Keep on your chest, no where that skin folds too much (thru movement). Thin skin.

Cessamet. I find this helps with lower torso and leg pain, but also gives you a feeling of numbness that helps with severe pain - and helps you to sleep as well (bonus!)

Gaba-Pentin - this didn't work at first for me. Cumulative perhaps. None of these medications will help you with all types of pains.. and I'm sure you know what I'm talking about - the different pains we come to know when it's all we know to feel pain. So undescribable that the normal categories (acute, dull ache, or whatever's on those lists doctors love). Gaba helps with the all-over pain.

You'll need some medication for the other pains - for me it's Oxycocet and Oxycontin (short and long active) - been on them for years and if you manage it correctly, it's again a better alternative than giving up. Opioids are terrifying and never forget that, repect and hate them, and you will find it's easier not to take it when not needed. Not everyone can do this, so if you're an addictive personality... don't even start with this kind of medication.

There's Torodol, Naproxyn, major Ibuprophen doses - carefully watched by a doctor for any drug of course. You need to experiment.

Alcohol is bad, but if you can't get pain killers and your at the door of suicide.. do what you have to do. Again, hate it and fear it - use it only if necessary.

Non-Drug treatments:

1. TENS machine. Expensive but worth it. I'm sure you've tried one of these due to your spinal injury (sounds almost like a euphamism.. anyone who's had spinal injuries will understand). Like drugs, this will not work for all pains, but it will work for some. Don't just experiment with medication in severe pain - try all your pain flavours with the nondrug treatments.. because you don't have to hate and fear them.. they'll be your friends 100%. This machine shocks you - you build up to an amazing and confidence building amount) thus shutting the pain gate on other pains. This pain is not as bad as regular pain.. after a while feels like a nice massage of tiny balls of cold metal - or little tiny hands.

2. Cold/Hot treatments. I have chilled parts of my body that have been in way too much pain - and sometimes it just shuts down the nerves in a way. This can also make pain worse. Experimentation DOES carry major risks, but like I keep reiterating - it's better than giving up on your body, your life. You can also use hot AND cold treatments in order to confuse the nerves in pain. This also can make it worse, but some flavours of pain can actually be distracted to the point of disappearing. Hot treatments for sore muscles - I'm sure you've done this but most people give up doing it when it's just starting to work. Don't use this on inflammation, strains, etc. Use it on sore muscles that have the dull hard pain.

3. Vibration therapy - just like the other treatments, this is about distracting your nerves so that they stop reading the pain singnals as much and start paying attention to the distraction. Don't use this on your spine, your injury will avenge itself for that I'm sure.

4. Pranayama/Breathing exercises. All the hardcore pain people I know (severe pain constantly) have found that the worse pain they have experienced is helped by slow and deep breathing. During my worst pain this has kept me sane. It is a natural sedative and it'll help.

5. Hypnosis - great success. You can even hypnotize yourself by repeating a mantra over and over again while you are not feeling bad pain.. when you are happy and comfortable. Or, if you're never comfortable or happy - just say the words when you're feeling your best. Then, after about two weeks, say the mantra slowly and consistently during your severe pain and your body will remember - hey this is calm time. This might not work for 6 months, or even a year, years.. but when you get really good at meditation.. it'll work. Keep trying, focus hard.

6. Read on the net EVERY little trick people have tried, write them down in a notebook - and try one every day. It'll drive you nuts at times, but once in a while you'll find a gem.

Social

1. Get rid of people in your life who are stressful for no good reason. I "Trimmed the fat" of my friends last year and haven't looked back. Selfish people, doom sayers, people who don't believe your pain, people that keep reminding you of negative things.. get rid of them and harden your heart to them. You have enough pain in your life. You will probably miss them, but after a while when you see the stress was causing pain, you'll be proud of your efforts and make healthier friends and other relationships.

2. Stop what you're doing that's stressful.. I know that sounds over simplified but it's great to make a list of your hobbies, jobs, chores, etc and write down the stresses involved. Be it chatting online or working at a place you hate or watching the news - watching stressful movies.. STOP and find a way to trim the fat there too. I knew someone with a pain disorder that would sit at a computer ALL day and wonder why his back hurt so badly. I'm not saying that's the case with you - I have a feeling you use the computer very sporadically and with care.

3. Stop apologizing! People with Chronic Pain of any sort apologize too much as they feel they are a burden. You are not a burden. If you feel like one, please look at the people around you and think: do these people really see me as a burden? If the answer is yes, consider the people you are around and trim if possible. Sounds cruel, but severe pain is serious business and requires an almost military heart which people like us don't have at the get go. We need to harden ourselves to make the tough choices. If friends are blaming you for being a pain, a burden.. you know what to do, and don't feel bad. Would you be like that???

4. Self Pleasure. I know I know, family site. I'll use code words. Whatever pleasure you can endulge in - do it. Within reason. I mean if killing gets you excited.. that's just not cool. Do it often, do it with abandon. If you have kinks, get into them - even if they're really weird. Especially if they are :) This goes with food, games, guilty pleasures. Whatever. Pleasure and as much as you can get. This will help you feel something good, and you NEED that.

5. Cry whenever you feel like it. Don't keep it in.

6. Try an elimination diet, sometimes certain foods make it worse.  Google it, do it, take notes. Try it three different times if at first it yeilds nothing. Severe pain doesn't allow for tests to always work out well.

7. Laughing Therapy - look for a laughing group in your area. This can be better than crying out.

8. Phew.. okay I'm not good around computers for that long. Just know there are people like you that have been to the places you have. Not exactly the same, no one can know your pain, but people know the dark places you visit. If you take anything from this post - I would say take the fact that those dark places have other people in them, imagine them - with you - supporting eachother and you. Imagine all of us together and know we can continue living like this if we adapt and try all we can. It's possible. Do not look to the future, live in the moment and deal with each breath. Do what you have to do to be able to tolerate your life and don't listen to negative people. Be careful, try try try.

You can do this. There will be more days like this where you feel like giving up hope, but not every day will be like that. Rest. Be spiritual above all else - as when the body hurts, it's sometimes good to focus on the soul and escape through faith or ritual. Pray every day. Doesn't matter to what. I will keep you in my thoughts.

Hugs to all of you who go through the Struggle.

Linda

5/17/10 10:29pm

I TOO AM AT THAT DARK POINT, I SAVED YOUR LETTER. THANK YOU!!! 

    NURSE BETTY ***  THIS ROOM IS WHERE I TURN TO WHEN I AM AT THE END OF MY ROPE TOO! I HAVE MET WONDERFUL PEOPLE IN HERE, AND LEARNED MORE IN HERE FROM OTHERS WHO HAVE THE SAME ISSUES AS US THAN ANY DOCTOR CAN HELP WITH. KAREN LEE RICHARDS HAS BEEN A HUGE HELP, WE ARE SO LUCKY TO HAVE HER TOO.,I ALSO SUFFER AND HAVE YET TO FIND THE RIGHT COMBO OF MEDS, I WAS DIAGNOSED LAST SEPTEMBER AND HAVE TRIED ALL THE F.M. MEDICATIONS THROUGH A RHUEMO DOC WHO WAS SUCH AN EGOTISTICAL *SS! HE  COULD NOT GET IT THROUGH HIS HEAD THAT THE MEDICATIONS HE WAS PUTTING ME ON WERE TOO HIGH OF DOSES, AND THEN HE TELLS ME TO "TOSS IN" 50 MG OF THIS AND 60MG OF THAT IN A MONTH. WRITES ME OUT A SCRIPT WITH 12 REFILLS AND A FOLLOW UP IN 6 MONTHS,,WHATTT?? I ASKED HIM TO TAKE A TICK OUT OF MY HEAD AS I FOUND ONE IN THE MORNING AND KNOWING I WAS SEEING HIM THAT DAY I DIDNT DARE TRY TO GET IT AND THOUGHT I WOULD ASK HIM, WHEN I DID HE LEFT THE ROOM, I WAITED,,, AND WAITED, HE NEVER CAME BACK, SO I LEFT WITH THE TICK IN MY HEAD AND A YEARS WORTH OF THIS AND THAT TO "TOSS IN". HE TOLD ME THAT GOING TO THE PAIN CLINIC IS A WASTE OF TIME!! I GET INJECTIONS EVERY SIX WEEKS, FUNNY THING I CAN WALK WITHOUT MY LEGS GIVING OUT WHEN I GET THE INJECTIONS. THANK GOD FOR MY P.C.P., SHE IS NOT A SPECIALIST, WE KNOW I NEED TO FIND ONE, ATLEAST SHE KNOWS AND SEES THE PAIN I AM IN AND IS TRYING TO HELP ME THE BEST SHE CAN OR ATLEAST KEEP ME COMFORTABLE UNTIL I CAN FIND A SPECIALIST-RHUEMATOLOGIST............THANK GOD FOR THIS ROOM. NURSE, IF YOU EVER WANT TO TALK, FEEL FREE TO, I HAVE A SHOULDER, AND A GOOD LISTENER TOO.  THANK YOU EVERYONE!!!!    HAVE A LOW PAIN DAY.

                              LINDA

Linda

5/17/10 10:41pm

2 THUMBS  UP "EMLUUUUUUUCY" !!!!!!

Emluuucy

5/17/10 11:05pm

:) I'm glad you liked my message. I was worried people would take it the wrong way, but I'm glad it wasn't :)

 

Thanks and I hope you're all feeling better. You're all in my prayers and wishes :)

Dana

5/18/10 6:33pm

Ditto to the thumbs up, Emluuuucy! Most excellent write up & great reminder for all. I really need to find a replacement therapist for deep tissue massage- it is in the top 3 of things that have helped me the most- but has been harder to find than a doctor LOL.

 

Dana

 

PARAINTN27

6/10/10 10:00am

THANK YOU!!! I live in chronic pain due to a mva in 1978 and I am a complete paraplegic, had many surgeries the last in 2001. My disc were gone and the bone on bone pain was and is awful!! I have stayed active over the years I am married and had a child after my accident. He is almost 25, and the sunshine of my life!

 

I loved your letter and I agree with you so much! If one thing won't work try something else!! when you said to rid yourself from people who bring you down, I get it!! I call it my edit button!! what is the point of dealing with these type of people (not trying to be mean just honest) There were so many of your comments that hit home for me and I hope other's will take the time to read it, and apply it! what works for me may not work for you! I always say we are a work in progress!   I would not wish the constant pain on anyone! but I was sixteen when my accident happened and I had a spinal fusion after the accident and went to Craig Rehab to learn my new way of life that was the best thing to ever happen as far as rehab! They worked us  hard but in a good way!! I had to learn how to do everything over! I had alot of years without much pain at all, until the hardware was working it's way through my back!! but at the time I had my baby and was so happy, I carried him full term but had a c-section because he was a big baby! at least for me 8lbs12oz and I am a short girl! he is my sunshine!! One other things that helps me is my dogs they make me laugh daily! They give me a reason to get my self out of the bed to fed and care for them, great therepy for me! I have to live on pain meds but beats being confined to the bed, I am already confined to a wheelchair! I don't want pity just a fair shake and  to be loved, and needed!   sooooooo thank you again because there is always people who have it worse, and to me the only failure is not to try! I will not allow this to define me, yes I have a disabity but I am capable of many things!! best wishes! BTW  I know this is a older post but a good one!!