New and Terrified

Hi, I'm new here. I hope it's ok if I just jump right in. Over 2 years ago I was given a medicine that my body reacted badly to. I lost my muscles and a year later they began to come back.. But, the pain was/is excruciating. I have been basically bed ridden for the entire time. Last July I finally opted for pain meds because I couldn't stand it anymore. This has enabled me to go from the bedroom to the couch, basically. I can walk, but not for more than a few minutes. Pain episodes can last up to 9 hours. Recovery after an episode or a necessary outing can take 5 days to a week. I've had 3 children and nothing compares to this pain (arms and legs) which is exacerbated by movement.

I was a teacher and had to leave a job I was born to do (over 20 years). More debilitating than the pain, I think, is the overwhelming fatigue. It's absolutely crushing. I simply have no words to adequately describe it. A couple of weeks ago, I finally accepted my car handicap badge. I've been fighting this tooth and nail, but I fear I am losing that fight.

So, why am I here? I'm not entirely sure.. Maybe because I find myself hurting inside and out. My family are great, but they just don't understand. More than anything at this moment, I just need to be heard, to be understood. When test after test comes out negative, I just feel.. beaten. I have two scars from a muscle biopsy for my efforts. I hurt--everywhere.

Thank you nvrthesame98... I have what they think is statin-induced myopathy, but they are suspecting ALS. Since that is a disease of exclusion, I have a long way to go. Right now, all I can think about is the pain. I'm terrified of it. I hate episodes.. I guess I should now call them flare-ups. During a flare up I have to be reminded that it will pass, but I never believe it. It truly terrifies me. Meds are ultram Er, tramadol, mobic, oxy, ibuprofen, acetominaphen, indomethacin. I hate them all. Team of doctors are best the VA can offer, I guess (retired airfoce).

The pain is burning, stabbing, crawling, sharp.. sometimes I can't even touch my own skin, it's so bad. Flare up or not, it's always there, it's just a matter of degree. Presently, I can't sleep and it is becoming more difficult to type. I must stop. But, thank you for the welcome. Will look into suggested.

my doctor suspected RSD for me one time and when I was in the pain rehab center at Cleveland clinic I met a friend who has RSD when you see the real deal there is no mistaking it

Hi Breal. Welcome to HW. You're at the right place. Everyone on here is supportive, compassionate, and always ready and willing to help. I love HW.

I was diagnosed with RSD/CRPS in 2011. It took a couple years; however, after finding the right doctor, he had me diagnosed within 6 months. The pain you are experiencing is what the beast of RSD feels like.

I'm glad your doctors haven't given up. My doctor never did. Like ALS, RSD is a disease of exclusion. I feel for you and the patience it takes to get diagnosed. I know how it feels to not know what is going on. Hang in there. Eventually you will know what your boundaries are as to what you can do and what you can't do. I have to stick to my boundaries or I pay for it.

Please know I'm not saying you have RSD as we are not doctors. It's just an avenue you may want your doctor to explore.

I wish you a better day as the day goes on.

HUGS,
2worried

Hi Breal and Welcome to Healing Well Chronic Pain Forum, I am sorry your having all these problems, living with pain is difficult, and I know all to well what it is like having to give in and accept it and the disability that can result from it! This is a great place to come, because the people here understand what it is like to live and deal with chronic pain. We can not only sympathize with you but we can also empathize. This is a great place to come and vent your frustrations, we always are here to listen and even share what help we might have, and of course you will always have our support. The nice thing about this forum is that we are all here for each other. So know that when your here at this forum your not alone with your pain! Again I Welcome you!

I also am retired Air Force then went back to school and became an RN, something completely different than anything I ever done in my AF career! But it was definitely the best Job I ever had, I had found my calling, but unfortunately it was not to last all that long, and I ended up having to go on disability!

White Beard

Hi!
I am a newbie here as well, jumping in if that's OK-and Breal- I am sorry for what You are
Going through, I sense strength in you from what you have already
Fought-Endured, being a Teacher is also a Noble Profession- and know you will have some hard days, better days will come...and I wish you the best in getting answers- some better control over your debilitating pain. Like most things involving no clear Medical answers, family can be downright rude sometimes, there is No shame in accepting prescribed Narcotics if you need them. Often, that alone makes others become cruel quickly- but reaching out like you did is Excellent! Here, there is
Strength- we are all in the same boat- different circumstances, but yet the same in many ways. I have similar episodes of
Absolute mind bending pain, My life changed forever 12 years ago, I was a 'Hot Line' Power Distribution Engineer- (Helicopter based Live Electrical installation work/inspections), our chopper hit an air pocket- came within 3' of an energized tower - , caused a 500,000V 'arc "Flashover'-40% neck/chest/arm burns-Skin Grafts,40' Fall, Broken back, 4 fused Vert.,Broken hip,(11 broken fragments)- all titanium plates- screws- grafts-etc...I was in a medically induced Coma for 47
Days, I'm thankful to be alive... My pilot was not so lucky ;( . He was
Also my Brother. I miss him every day.
I opened my eyes to his daughter, Tiffany
was 5 at the time. I do my very best to watch over her, it's
Hard with my pain type- I took nearly all the
Electrical shock left shoulder to right foot- nerves are very
Heavily damaged, and they had to replace my femoral artery
Artificially- it turned to a glass-like material from the electrical heat
During the electrocution- as did other
Vascular structures, but they saved my leg- to walk,(and kick
20+ year olds in the rear when they try dating my 16-1/2 yr old niece!)lol Thank You-everyone for listening to me going on and on,
Your Welcome if I helped put you to sleep!
Wish everyone the best!

Hello Breal,
So glad that you found this forum, welcome! As a fairly new member I too have found that this is a wonderful site to come to for sharing your story, defining your pain, receiving hope from hopelessness and most importantly to know that YOU ARE NOT ALONE! Chronic pain is life altering, it takes away from us everything that we hold dear and transforms it into a morph of the past life that we knew.
You must never give up, never loose hope, always turn the other cheek to the ugly face of pain.
There are so many good people here in this forum that can offer guidance, spiritual help, share their stories and provide insight into the unexplained.
I am sorry for the pain you are in and the difficulties you are having.
Once again, welcome!
Pam

Breal that's what makes this site so outstanding, here you can be productive and it is just by being here and helping others as they help you! For me I found it gave my life some purpose, and maybe in time you will find it will help you to.

One thing I would like to warn you about, people suffering with chronic pain will often isolate them selves, ( there have been many threads written about this in the past) often because others around them, including loved ones, don't under you and your pain. So it is often a natural reaction to withdraw and isolate yourself. Take it from one that knows, that is one of the worse things you can do! It just makes things harder for yourself, and once you start down that road, you just might find yourself all alone in the end! It can happen, for me this site was a saving grace, and it helped me realize some of my mistakes and errors in my ways, and in time I was able to correct them. But it was painful and difficult! So I urge you to keep trying to communicate with your friends and loved ones and force your self to do the things that you can, with them! Just don't let them drift away (it can and often does happen) but don't let it happen without at least trying your best to keep them close and keep involved with them and their activities as best you can. Don't rely on just your family and maybe their friends, KEEP YOUR FRIENDS CLOSE! and don't lose them! It is important!

I wish you all the best!

Please don't despair, we are all here for you!

White Beard

White Beard spoke the truth. I can not add much except....bookmark this site so you can come back and visit with your new friends.

@pitmom,

Just saw something in your post that I thought I should clarify for you/everyone. Tramadol does not contain acetaminophen. However, there are formulations that do contain both drugs (like how percocet cotains oxycodone AND acetaminophen). Ultracet is one such formulation that contains tramadol AND acetaminophen. But regular old generic tramadol (ultram) is tramadol only.

Believe me, I work in the veterinary field, and we prescribe tramadol everyday. So I am very familiar with the drug (believe it or not, it actually works much better for pain in dogs than it does in people). Acetaminophen is highly toxic to cats (also toxic to dogs, but less so than cats), and so that is actually one of the reasons why we routinely use alternative drugs, such as tramadol to treat pain in cats and dogs.

So no need to worry about tylenol intake with plain old generic tramadol. You'd only need to worry if you are specifically prescribed a formulation containing both drugs.

Skeye

PS. The suffix "-ol" in the name of a drug has nothing to do with containing tylenol. It just means that the drug is an alcohol or phenol derivative.

Post Edited (skeye) : 2/19/2015 10:13:46 PM (GMT-7)