Husband has given up hope for relief

[Violet]

Hi everyone,

My husband has chronic pain problems (head and back) due to hydrocephalus and back injuries caused by being turned improperly during surgery. He is in pain most of the time and it seems to get worse when the weather changes. I have taken him to the ER several times and am appalled by the way he is treated - one doctor even asked if he came to the ER every time he had a headache!

He had a "test run" of Botox injections about 2 years ago, and the conclusion was that he may have some relief with them. A couple of days before he was scheduled to have them, his life changed drastically (long story) and he moved to Georgia.

He now believes that nothing will help him and he's doomed to living a life in pain. He self-medicates by smoking cigarettes (he claims they relax him and that helps) and drinking.

I feel so helpless when he says he's hurting. He's only 25 - way too young to consider living the rest of his life in agony. I've considered making an appointment for him, but he would refuse to go.

Does anyone have any suggestions on how I can motivate him to find some help? He's tired of being disappointed.

Thanks for listening.

Violet

[Stetson]

Don't give up !After 4 years of being in pain every day I took my pain
management in my own hands and made suggestions to my doctor.
Swicthed medicatons and now pain free most of the time! I was looking
at disability and the Doc had agreed!Thank God for methodone!

[Boopers]

I am so sorry. You both seem so helpless. Please don't give up. If you could find him a pain management doc, that is what he needs. A pain management doc is who we all go to when there is nothing else that can be done for us. If you can find a good one, he will prescribe drugs that will give him relief and not feel like giving up. I felt the same way he did until I found a good PM Doc and now life is worth living again. I wish you both the very best. Please come on any time you need to talk. I know it's very hard for you, too. We would also like to know how he's doing.
Take Care and Good Luck,
Love,
Linda

[bewolf]

I read this post yesterday and I still find it hard to reply.

I am also a carer for my wife who is a chronic pain sufferer... and has been for several years.

I have no magic wand, nor any pithy quotes.

It is hard to see him in pain and not be able to do any thing about it.

And yes we have traveled down the smoking and drinking route.

And dissapointed?
Yes been there too...

We have been to A&E (ER) so often they were thinking of charging us rent <--joke.
But they did know us by our first names

It has taken us a long time... and it is still not over. My wife's condition is more bearable now as she now has control over the amount of meds she is able to take (sorry we live in England which has a different system to the USA)...

But she still takes 50+ tablets a day.(Plus liquids, heat pads, tens machines, accupuncture, Ben Gay, yadda, yadda, yadda.)

But she no longer screams all night and the neighbours have stopped calling the Police (who got to know us quite well too). She no longer makes herself sleep all day to escape from the pain.

Your feeling of helplessness I do so much understand. When a cuddle would make her scream more, even a draught from the window...

anyway ... To stop nattering here...

I have been at this site for a few years now and have gained a lot of information, from many of the forums. And I have been able to educate Drs and consultants on pain relief and as for ER doctors? Ha! I eat them for breakfast now.

As to motivate him? ... Well... the easiest way is to tell him to come here and ask folk.

The hydrocephalus forum is a great forum with some wonderful people there who are very knowledgeable and have a great sense of homour.
The spiney room might be able to help with the back problems.

If he can't or won't come here... then you are welcome to learn things here too as I have done.

Believe me you are not alone... nor is your husband.

Wolfie

[Violet]

Thanks for your answers. I teared up reading them. It does seem very lonely sometimes.

I'd love to get him to a pain management doctor, but these days he won't go to the doctor for anything (he's had a sore throat for a month and still won't go). He also needs to establish a relationship with a neurologist and/or neurosurgeon in case he has problems with his shunt and he won't do that either. The couple of times he's tried he's been turned down. He called a pain doctor whose website looked especially promising and was told that they don't treat his condition. He called a neurologist and was refused an appointment because, in their opinion, he didn't need one.

I'm not ready to give up, but if he isn't willing to see anyone there isn't much I can do.

[Tbackpain1]

Violet,

I too am having difficulty coming up with something to post to you, to encourage you and your husband.

I'm 27 now, but I started with Chronic pain from spinal problems (got hurt at work, now T-spine herniations) when I was 21 (less than a month after my B-day), and my the boyfriend stuck with me, and now we're married. I can only imagine what he deals with being my care-giver, and has dealt with in the past. The anxiety, the frustration of not being able to make me "better", the loss of a partner, lover, best-friend...I'm sure you understand what I'm trying to say.

Have you encouraged him to come to a support forum? Its easy to shut yourself away...I fight with it every day...keeping that monster of depression at bay. Drinking, smoking...well I've never been much of a drinker, but the smoking thing...ya, I understand. I fight with that demon as well. But it's gotten much better since going into pain management. I didn't have much of a choice in the matter...my family pretty much told me I was going, and I was going to see a shrink too. Whether I wanted to or not. It was tearing them apart to see me in so much pain, and that I wanted to kill myself. I was so far in despair...knowing I was going to have to live with this pain every day, for the rest of my life. How can anyone really accept that their next 60+ years are going to be miserable and painful?

Its definitely difficult finding pain management doctors that do more than just poke needles in you when you're a spinal patient. It would be nice if that was all it took to remedy the situation. It was alot of trial and error for me and my docs, but we've finally been able to find a combination of medications that make life bearable, and I've been able to go back to school, since the pain no longer rules my every waking moment.

I wish there was something more I could offer. There's alot of disappointment in getting the right pain management...alot of ups and downs. But when you finally find the right doc, who's willing to work with you and treat the problems that you have, it can make a 180 degree turn-around in your life. My husband has his wife back now...not the same wife, but a different, more mature wife...and one who's extremely grateful for all his support. I'm no longer a burden on him...and I think that was the thing that hurt me the most...

Theresa

[joeworkflow]

I know it's tough because you're having to be the strength for both of you right now, so try and get some support for yourself, too. You need to recharge!!

When I first found Brain Talk I simply asked if anyone lived in my city & state and if they could recommend a PM doctor. (My Primary care doctor had helped me as far as he could).

I did get a response that changed my life forever! The PM doctor I was referred to is just amazing.

The reason I like this approach is because you're talking to people who "get it" and who may have been through a number of doctors until they finally landed on one that was compassionate & willing to work with them as an individual. The last thing your husband needs is to start seeing doctors who will continue turning him away. (of course no one can make promises, but finding a doctor that is already treating some of the Brain Talk regulars would be wonderful!)

I've been down the self-medicating path and it's a nightmare. Not only is he in pain, he's facing depression and when you add booze to the equation it creates a downward spiral. (speaking from experience!!) He needs to get help, so if anyone is from Violet's city or surrounding areas please send her the name of your PM doc!!

The person who helped me actually called the doctor first to make sure he was taking new patients. He even got the name of my Primary Care Dr. so the PM doc could confirm that I wasn't a drug seeker. I don't know if you believe in miracles, but the way it has all come together is truely a miracle. It saved my life...really.

Joe

[hermit]

hi, google "morphine pump implant" an get him to look into it, might be a option, if interested, id call around an ask pain doctors about it.
good luck, sincerly , hermit

[Violet]

Originally Posted by joeworkflow

He needs to get help, so if anyone is from Violet's city or surrounding areas please send her the name of your PM doc!!
Joe

We live about an hour west of Atlanta.

Thanks again for the kind words.

[Globug]

Perhaps this article might help your hubby, and by all means visit the American Pain Foundation Online to help you find a doctor. Here's the doc find link http://www.painfoundation.org/page.a...FindDoctor.htm and the main site where you can also find information to help you as a caretaker.http://www.painfoundation.org/


Tips for Treating Pain
An estimated 50 million Americans have chronic pain and nearly 25 million suffer acute pain each year. How to find relief.

Web Exclusive
Newsweek
Updated: 1:01 a.m. CT Oct 8, 2006
Oct. 8, 2006 -

Practice Healthy Habits
Get adequate rest, eat a healthy diet and engage in regular exercise. (Ask your doctor which exercises are safe for you.) Relaxation techniques like meditation, visualization, hypnosis, and biofeedback may also help you feel better.

Care for your Emotional Health
People in chronic pain have been found to have an increased incidence of depression, anxiety and sleep disturbances. Your physician may want to prescribe medication or may suggest cognitive behavioral therapy (like relaxation techniques and psychological therapy). It may also help to share your thoughts and feelings with loved ones and to join a support group. (The American Chronic Pain Association, among others, has support groups throughout the country).

Know Your Treatment Options
There are many options for treating your pain beyond prescription and over-the-counter medicine. Complementary and alternative therapies include biofeedback, meditation, relaxation techniques, yoga, acupuncture and physical therapy. There are also interventional treatments for specific types of pain (like electrical stimulation and injections). Ask your doctor which is best for you.

See a Pain Specialist
You can ask for a referral from your primary care physician. Many professional physician organization web sites also have listings of their members available (see the links below).
Source: The American Pain Foundation


And something that I'm sure you've heard but maybe haven't really taken to heart is that you MUST take care of YOU first. I know that makes some people feel guilty, but honey, if you don't have a mentally and physically healthy YOU then you can't properly care for him.

So here's some suggestions:

Take one of Mama Glo's Mini Vacations by getting yourself a book on tape, some lavender bath salts, some lavender candles, something cool to drink, and then spend some time alone in the tub full of warm lavender bubbles while listening to a great book on tape.

Arrange for a day out and get someone you trust to come and visit your hubby while you are gone. Grab some lunch with the girls, go to a museum, or just go shopping at the mall.

Be sure that you take care of your Spiritual needs, your Higher Power can be a huge source for comfort and inner healing even if you can only cry and utter His Name.

And this link below will take you to a list of help for the caregivers.
http://www.painfoundation.org/page.a...Caregivers.htm

You have a huge task, but if you take care of you it will be ok. I know, I was a caregiver, and am now receiving help from my husband who cares for me due to my chronic pain from Degenerative Disk Disease, FMS, and MPS.

God Bless You!