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Community Member
Posts: 95
Registered: ‎03-19-2003

Any advice on how to live with chronic pain?

Hi everyone,
Over a year and a half ago I was having severe head, neck and left shoulder pain. A MRI was done and I found out that I had four buldging disc in my neck, all in a row. The doctor would not do surgery because he said it was dangerous and could not say for sure it would help me. It then took seven months to find a doctor that would even treat me for pain. Leaving me in bed or sitting in a chair continuously for all that time.

Before I was thin, but gained a lot of weight due to NO activity at all. Now I feel I am worse off than ever. With all the weight I have gained and literaly no energy at all. Also with the medication I take, I have have no energy. My body has become extremely weak over the past year and a half. I'm tired of narcotic meds, but without them my pain would be unbearable. I am also being treated for depression because of all this.

I smoke a lot when I'm in pain. It is a downward spiral my life has gone into. I have also had bad mood swings that have affected my life with close relatives and friends. Alot of people just do not understand chronic pain and how it affects you and those around you. I don't know how to start to climb out of this. I want at least some of my life back and know I need to start to exercise slowly. How does a person exercise when taking pain meds all the time? Any input would be greatly appreciated.

Thanks, Judith
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Community Member
Posts: 4
Registered: ‎01-22-2003

Any advice on how to live with chronic pain?

in reply to judith711
Dear Judith: I understand how you feel. I had some horrible pain I lived with for a couple of years and I don't think anyone (including the doctors) understood. I had some luck with acupunture and would recommend it to anyone - it has no side-effects. Also, if you can learn some relaxation methods, such as deep breathing and meditation, it would relax you so you wouldn't be concentrating on the pain all the time. Also, music therapy helps a great deal to soothe you. Some hospitals in large cities have pain clinics where the doctors and nurses work with the patient to help control their pain.
I have recently started a yoga program, but be careful that you only do gentle yoga. The breathing exercises are very good. I'm sorry I don't have any more help to give you - You need someone to hold your hand and give you a hug and tell you things will get better. I hope you have someone like that in your life.

With hope that you feel better soon,

Nobby
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Community Member
Posts: 11
Registered: ‎01-25-2003

Any advice on how to live with chronic pain?

in reply to judith711
I too hope you're better soon. The narcotics contribute to your feelings of "weakness", and the mood swings. They also make it impossible to exercise, let alone get out of bed each morning. If you can find a good doctor who specializes in pain treatment, not one who simply hands out a prescription, he or she may be able to wean you off of the narcotics and get you started on alternative treatments.

Much much luck to you.

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Community Member
Posts: 95
Registered: ‎03-19-2003

Any advice on how to live with chronic pain?

in reply to judith711
It felt good to hear from you, Nobby and laaaaa. I am going to try a pilates video I bought recently and look for a video about yoga. The relaxation methods are a good idea. I have got to start somewhere and soon. There is a fitness center next to my doctors office that has a whirlpool. I want to try this when the weather gets warmer. I think I would defeat my purpose trying it now. Getting all warm and relaxed then going out into frigid weather to go home.

I cannot afford acupuncture treatments. I wish I could, I have heard good things about it. Also, I am looking forward to spring so I can get out and go for walks.

Thanks again, Judith
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Community Member
Posts: 4
Registered: ‎01-22-2003

Any advice on how to live with chronic pain?

in reply to judith711
Judith: I live near Boston and there is an acupunture school where treatments are by students (supervised by doctors) and they are on a sliding scale, and are quite cheap (about $20-25 each). If you are near a city, there might be a school where they teach acupuncture or massage therapy. Schools offer wonderful services at reduced rates.

Just another thought....

Nobby
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Community Member
Posts: 50
Registered: ‎10-28-2004

Any advice on how to live with chronic pain?

in reply to judith711
Hi Judith, Sorry you are in pain and can sympathize. However You've got to pursue this with Drs until you find a COMPETENT ONE THAT WILL TREAT YOU. I think we all know that if your name was Laura Busch, or Oprah Winfrey or Julia Roberts, no Dr. in their right mind would send you out of their office in pain and say there is nothing they can do-how simply absurd. That is just ridiculous and it puts me into a tizzy every time i hear a story such as yours. If you need a referral call the DR who wouldn't treat you and ask for a referral to someone who will. I wish you the very best.
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enljr_art
Community Member
Posts: 40
Registered: ‎12-31-2009

Any advice on how to live with chronic pain?

in reply to judith711
Hi Judith. I've been where you are and I know exactly how you feel. I have peripheral neuropathy that has gotten gradually worse over the years. Although my pain is different than yours I live with chronic pain almost every minute of the day. My feet feel like they are constantly on fire but at the same time they feel numb and heavy (really hard to describe exactly). I have tried over a dozen different doctors and many more medications including narcotics - nothing has worked for me. It's a very lonely feeling and hard for many people to understand. Although it has severely diminished my physical activity, to lay around all drugged up was worse for me than anything. Right now I am on no medications at all and dealing with it has been better. I use other methods when the pain is unbearable, like meditation and soft music, soaking my feet in ice water, AND getting outside and walking around for as long as I can. After many different kinds of tests no doctor can tell me what is causing my chronic pain or how to treat it. I have finally gotten used to doings things differently than before and that was the hardest thing to accept. It's easy to feel like you're in a downward spiral but once you accept the fact that your life is different now, you will learn new ways to live in relative peace. God bless you and take care,
Ed
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Community Member
Posts: 37
Registered: ‎01-24-2003

Any advice on how to live with chronic pain?

in reply to judith711
Hi, You have gotten some great information here. I want to add my opinion that acupuncture and water exercise may make a big difference. You could also try Glucosamine/Chondroitin, which is helpful for bone pain. Please email me with any questions or if I can help you in any way. Karen at Nurse's Therapies
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Community Member
Posts: 95
Registered: ‎03-19-2003

Any advice on how to live with chronic pain?

in reply to judith711
I want to thank all of you for your info and support. It means everything to me! I have trouble getting warm so Mark I appreciate your response. I hurt worse when I am cold. Yes I definately need to get into that warm jacuzzi. I will look for some place that has a pool. Yes I am to the point of taking matters into my own hands!

It was my orthopedic surgeon that said he could not help me, (surgery). I don't really want to have surgery anyway, I know it's risky.

Ed, my mother has very bad problems that sound VERY similar to yours with her feet. She describes hers as feeling like she has open blisters all over her feet. The doctors cannot help her or figure it out. They tell her that her nerves in her feet and or toes are dying. I don't think she has any blood circulation in them. They attribute it to her heavy smoking, she has been a smoker for fourty years. I'm not assuming you are a smoker, that is just what's going on with my mom. My smoking severely depletes any energy I might or could have. I have to stop.

I once took the Glucosamine/Chondroiton and can't remember why I stopped. I believe it also helps to repair soft tissues! And rebuild them. Is that correct Nurse's Therapies??

I am going to start helping myself. Laying around makes me feel horrible. You all are so kind, Thanks! Judith

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Community Member
Posts: 35
Registered: ‎01-24-2003

Any advice on how to live with chronic pain?

in reply to judith711
Judith
I do know how you feel. Narcotics helped my shoulder but not my back. Just started pain management clinic and am hoping it helps both areas.

Do hang in there. I know a lot of people are against pain killers. Don't be hasty in getting rid of them. If you need them, then you need them.
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cherry-pie-and-roses
Community Member
Posts: 932
Registered: ‎01-25-2003

Any advice on how to live with chronic pain?

in reply to judith711
Judith,
I suffered from severe pain, too, for several years. And that contributed to my significant weight gain as I became less and less functional. Without overloading you with my list of ailments, just believe me when I say I truly understand your suffering.

My last resort was prayer. And the answer came in the form of low-carbohydrate way of eating. I stopped following the food pyramid (to which I had diligently adhered), instead increased my fat intake, decreased my sugar and starch intake, and, yes, eliminated all of the pain in my body. All of it. Even some that doctors said would never go away, would never subside, and would eventually kill me.

Sugar really is a killer. It affects the inflammatory response in our bodies.

If you're interested in learning more about this WOL (way of life), you can read more in any book by Dr. Atkins, or Protein Power by the Drs. Eades, or even Suzanne Somers' books. We have several ongoing threads on the Cooks Nook Board for people who are low-carbing.

Brenda
GPSA Glass & Pottery Sellers' Association * NAVT
Needle Arts & Vintage Textiles Board * Facebook
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Community Member
Posts: 47
Registered: ‎01-23-2003

Any advice on how to live with chronic pain?

in reply to judith711
Hello, :-)

Wow, there are too many of us in pain. :-(

I can tell you that I have been in constant pain for so many years that being pain-free is a dim memory. I am hanging by a thin thread to hope that one day,,, one day I'll be pain-free. (hope springs eternal?) :-)

With me it's the neck, right shoulder, upper back, and my right knee. The lower back is an on and off thing but the other parts are in constant pain.

As to the neck, It got so bad that I couldn't turn my head nor lift it or lay down without assistance. (heads are heavy) I had lost all feeling in my right hand and my upper arm was like it's on fire.

To make along story short, I had to have the surgery where they fused the disks. I now have a plate and screws in my throat. (plus talk about family jokes about screws loose!) :-)

The surgery was brutal and succesful. The numbness was gone and I regained feeling in my hand. Recovering from the bone grafts was really hard. I was numb from hip to knee. The feeling came back except about 6 inches around the site of the grafts.

God bless the doctors that did the surgery. God bless the nurses and the assistants. I owe them more than I can say. I think they are the best.

The problems that I have now are from about three years ago. Four months after the spinal surgery I got rear ended.

It was the first day I got into my car to go to work. First day driving after surgery. I was stopped at a red light. The guy that hit me had his mind more on his exams than on driving. :-(

Now, my right hand and fingers go numb again. The back of my neck, my shoulder and upper back is in constant pain. The muscle knots and the spasms are agony.
I think of it as a bad symphony or a very bad orchestra.


So, I haven't had a pain-free day for years and years. The most pain-free or the least pain was the period right before this last accident and I was still recuperating from the bone grafts and the surgery.

The worst (nah, just another bad part of all this,) is that the ones around me think they know what I can and cannot do. There are things that are simple to others that are beyond me. I just can not do them. There are things that I can do that others think I shouldn't even attempt.

Enough of all this, you wanted to know what helps?

A wacky sense of humor. :-)I choose to see what's funny and I try to avoid the ugly. I take big breaks from the newspapers, tv news and so on.

Music and or silence. I found certain music does help with my body and moods too. :-) Certain sounds can actually increase or decrease my pain. I experiment with what feels good and end up with an eclectic taste in music. :-)

I accept it and work with it. I don't fight it when it acts up bad. I take the meds. :-)
There are bad days and worse ones.:-)

I have relearned new ways to work with my body. There are right ways of lifting anything and wrong ways. I hug an item to me istead of carrying it away from my body. Little tips but they make a difference.

I Try and am trying to improve my posture. I used to have great posture and because of the pain and spasms I really ruined it. I hunch my back and that's not good.:-)

I use heating pads. They have the disposable ones that give you steady heat for hours. They are thin and they have some that go on your body and some that go on a shirt.

I use the tens unit but it sometimes aggravates rather than helps.

I try to watch my diet for I found out it does affect how I feel.

I take vitamins and minerals. I am learning more all the time about them, homeopathy and flower essences. I want to know more about the color therapy too.

I plan on moving to the west coast because I can't take the cold and humidity here.

I also plan on trying the water therapies after I move.

I am trying to get back the ability to meditate and improve my imagery. It's hard when I take meds and it's hard when I don't because the pain is intense.

I work at my own pace. No one really feels what I feel in my body.

May god grant us all good health and less pain.
Sana

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Community Member
Posts: 3
Registered: ‎02-10-2003

Any advice on how to live with chronic pain?

in reply to judith711
The other people are on track. Until a few weeks ago, (I quit because I just couldn't take the pressure) I worked for a number of Spine doctors in South Carolina. Supervised exercise programs like yoga are great, but ask your physician. Also, ask him about a TENS or MENS unit for home use, these are electrical stimulation units which are usually covered by insurance and can help block the pain signals. The MENS unit also stimulates the muscles helping out with the muscle atrophy that can occur with the lack of movement caused by chronic pain. I love mine. There are also pain patches which release the narcotics slowly into the system, keeping the level of medicine in your bloodstream at a steady level so you don't have the highs and lows of pain medicine into the bloodstream. As well there is a patch called Lidoderm which affects only the area it is placed on. Ask your doctor. Remember, though that if your doctor isn't helping you, there are many others around. He or she should be able to find a program of physical therapy, that will enable you to live your life, not pain free but at least in a manner that you are not debilitated by the pain.
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Community Member
Posts: 37
Registered: ‎01-24-2003

Any advice on how to live with chronic pain?

in reply to judith711
Hi Judith, In answer to your question about Glucosamine/Chondroitin:
Glucosamine provides the raw material needed by the body to manufacture glycosaminoglycans, important structural components of joint cartilage. It may also play a part in wound healing. It provides the joints with the building blocks they need to repair damage caused by osteoarthritis. It is not present in significant amounts in most diets and most supplements are made from seashells. Glucosamine sulfate has been the primary form used in studies of people with osteoarthritis. For this reason, it is the preferred form. The most successful trials have used 500mg. three times a day. People with Diabetes should consult their healthcare provider because blood sugar levels need to be monitored while taking it. Allergic reactions are rare. Some people get mild, reversible stomach upset from it. I would be happy to obtain Glucosamine/Chondroitin for you. I have access to companies which only healthcare providers can use, and would be able to pick the best quality, standardized dosing, which is very important. Please email me if you would like me to do so. Karen at Nurse's Therapies
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Community Member
Posts: 1
Registered: ‎02-11-2003

Any advice on how to live with chronic pain?

in reply to judith711
I know what you mean, I have a thryoid problem that causes aches and pains like fibramyalgia. I like to go on About.com and you can go under health forums I think they probably have a chronic pain area, where people trade info, vent, encourage, and etc. It's a great way to get support. There are even support groups out there through the internet, and places to meet for things like Chronic pain. You could see a mental counselor to help you through it, they do stuff like that, too, because gosh, chronic pain can cause a lot of things to spiral. I know what it feels like to hurt, and feel isolated, and get depressed over it, etc...but reach out and talk to others,,and really try stretching and yoga and on a really, really good day, go out for a walk...good luck!!!
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Community Member
Posts: 2
Registered: ‎02-14-2003

Any advice on how to live with chronic pain?

in reply to judith711
try magnetic therapy. It works ...but make sure to get a good one...like mine....mine even have a 20 year warranty
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Community Member
Posts: 95
Registered: ‎03-19-2003

Any advice on how to live with chronic pain?

in reply to judith711
I want you all to know how much I appreciate every single one of you who has responded to my topic. I feel better hearing from caring individuals with your stories and advice.

I was really sick last week and still feel weak from the body aches and 102.5 fever. What I am getting at is...I have quit smoking. When I was laying in bed sick and could barely breathe, I wondered if this is what it would be like to have emphysema. I have smoked for 20 years and I know my lungs have been affected, cause it always hurts to breathe when I first wake up in the mornings, before my being sick last week.

And now if I can beat this addiction, I feel my recovery from chronic pain can only gain speed. I will be back soon to write and check in with all of my friends!

Judith!!!!
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Community Member
Posts: 95
Registered: ‎03-19-2003

Any advice on how to live with chronic pain?

in reply to judith711
LOL! Never been to Vegas, so no trophy ashtrays to throw out. I'm an old woman and don't move too fast, as far as getting to the fitness center. This flu stuff has slowed me down tremendously. I don't think I will need help staying away from cigarettes, just smelling smoke makes me sick.

Judith
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Community Member
Posts: 95
Registered: ‎03-19-2003

Any advice on how to live with chronic pain?

in reply to judith711
Does anyone know if you can catch stuff from public whirlpools or jacuzzis? Feel free to e-mail me on this subject!

Judith
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Community Member
Posts: 6
Registered: ‎01-08-2003

Any advice on how to live with chronic pain?

in reply to judith711
Hi Judith
This is regarding your question about catching stuff from public whirlpools. I think is rare but yes it is certainly possible. I worked for a major company in Harrisburg, PA who had a sales meeting at the Hershey hotel in nearby Hershey, PA. And yes it is true the street lights are shaped like Hershey Kisses. A bunch of the salesmen that used the whirlpool at the hotel came down with a very nasty staph infection. Several were hospitalized. So that is my story, I hope you are feeling better
al
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