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Any advice on how to live with chronic pain?

(1 of 382)
Any advice on how to live with chronic pain?
Feb 9, 2003 06:08 PM
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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Any advice on how to live with chronic pain?

(381 Replies / 24,946 Views)
Any advice on how to live with chronic pain?
Feb 9, 2003 06:08 PM
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
Page: 5 of 16
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by 12yankee (856 ) View Listings
(96 of 381)
Any advice on how to live with chronic pain?
Feb 25, 2004 10:04 PM
Hi Angela,
I found out just a few hours ago that my surgeon had lied to me and that I had been in a study of only three people who had recieved these particular implants. The surgeon had become disabled due to a car accident and had sold his practice. Last month he was sued by another person whose implants had dislodged. I had called my surgeons old office and they had told me that my records had been destroyed. My pain specialist was a key witness in the other person's lawsuit and when he called me into his office today to tell me the truth. He said that I may have to follow up on a lawsuit now that my jawjoints are starting to break through the skin. He is afraid to continue with treatment without the records,but says that they will start out with exploratory surgery and try to figure out what to replace them with.It is very scary,but I do believe that everything happens for a reason. These past surgeries have cost me two houses,two divorces and alot of strain on my family and friends. I am glad that I still have my sense of humor and my dog!!
Thank you for your kind words and I hope that everything works out for you.
Paulette
(97 of 381)
Any advice on how to live with chronic pain?
Feb 26, 2004 08:26 AM
Greetings to all.
I have had chronic pain for years and have found a couple of things that help relieve the pain and also the stress that comes along with it, which of course makes it worse. Feverfew is awesome for back pain, joint pain relief, headaches and neck pain. Get a good one at a health food store..take it faithfully and you will feel better, mental and physically...and it can be taken with other prescription meds. Takes usually at least a couple of days to start acting but believe me you will tell a difference within a week. Also vitamin B complex with at least 50mg of b6 will do wonders for you. B6 is a natural diuretic and it will stop you from killing people when you are pms-ing or menopausing. Take it everyday...B complex is one of the best things to take for stress also and will help calm those nerve ends down. <;o) For those of you who had the add children with hyper activity or have it yourself....Melissa Supreme at most health food stores will work wonders in that area too...not too tasty...but try a few drops under your tongue with grape juice or other strong tasting juice...gag..and then enjoy the rest of your day. Non-alcohol form also available for children. One last one and probably my favorite, is PURE lavender essential oil...put a few drops in a vaporizer and watch your whole household calm down and it also kills airborne bacteria...and if you can't sleep this will do it. I run mine all winter, well and summer too, at night. Put some in some water in a mister and spray on pillows, covers, over your children....hahaha...wherever to calm things down and kill germs.
(98 of 381)
Any advice on how to live with chronic pain?
Feb 26, 2004 06:19 PM
Hi again Paulette,

It sure does sound like you've been through the wringer and back. I hope this other doc will get you all taken care of and you won't have to go through anything else afterwards. Has he given you any idea how long to expect the new treatment to last and if you have a chance of being relatively comfortable afterwards?

Records were destroyed huh? I'd almost bet is wasn't accidental either. Some lengths people will go to sometimes to avoid having to take responsibility for something they did wrong amazes me.

I'll be praying for you!

Angela
(99 of 381)
Any advice on how to live with chronic pain?
Feb 26, 2004 06:22 PM
Hi lil*lulu!

Some excellent advice to those who can tolerate different types of vitamins and such. My mother swears by feverfew for avoiding colds and stuff. Didn't have any clue it could be used for joint pain as well. Another thing I tried (didn't work for me very well but might be just the thing for someone else) is Coral Calcium. Some of my hubby's co-workers just love it and say it's worked wonders for them. No such luck for me, but hey, it just might help someone else. :<)

Angela
(100 of 381)
Any advice on how to live with chronic pain?
Feb 26, 2004 09:30 PM
Hi Angela,
This morning my jaw joint swelled and tomorrow I have an emergency appointment to have the fluids drained. The pain specialist had suggested that procedure when I last saw him,but said that it could lead to infection so he was afraid to go ahead with it.I guess that that is a risk that I will have to take. It may lead me to have a surgery sooner then was expected. I know that they are talking about at least 4-5 surgeries in the very near future. I suppose 42 surgeries was just not enough!
You are very right about them "destroying" my records. I went to look up my surgeons name on the internet today and all that was under his name was a collegues name. It just happened to be the doctor that he had turned his practice over to.I have no choice but to sue because the new surgeons are afraid to touch me without those records.
It is definetly all about the money not his patience and that makes me sad. I really believed that he had my wellfare in mind.
Thank you for your support!
Paulette
(101 of 381)
Any advice on how to live with chronic pain?
Feb 26, 2004 11:12 PM
My daughter has chronic pain and it has been constant. The Doctor's recommended so much pain medicine she did research before taking and decide not to. She was told by a Dr. to take some vitamin supplements. She is now taking Omega III-for inflammation, Cal-Mag-for the nerves and Formula IV- a multi-vitamin and she is getting better. These vitamins are on my ebay store.
(102 of 381)
Any advice on how to live with chronic pain?
Feb 27, 2004 10:18 AM
Have any of your board members tried acupuncture. I do
no live with chronic pain in the way most of you do, but
i have struggled with allergies and IBS for 20 plus years.
After taking every known drug to help with these problems,
I had a friend recommend going to acupuncture. I cannot
begin to tell you the difference it has made in my life.
I am down for 4 allergy tabs a day to one, and my stomach
problems are now normal. I have been going for weekly
treatments and I have only several more to finish. This
is only a thought for those of you who feel at the end of
your ropes with your pain.
(103 of 381)
Any advice on how to live with chronic pain?
Feb 27, 2004 06:45 PM
Hi Turtlehawk7

Acupuncture would be okay, if I could get insurance to pay for it. That is about the worst trouble, getting insurance to pay for anything they don't consider routine. That is what I am battling right now to get the SCS implanted. The doc did suggest that and magnets as well, but since we're income limited, we have to do treatments the insurance will help with. Am still battling to get my SS claim settled as well. Has anyone else been trying to get that? It's been well over a year now and still fighting. Hopefully that will be settled one way or another soon.

Any suggestions to help fight pain are more than welcome, at least for me as I am tired of dealing with it.

Angela

(104 of 381)
Any advice on how to live with chronic pain?
Feb 27, 2004 09:57 PM
Hi Angela
SS always turns you down twice, then you have to get a lawyer and he will help you file for the third time and set up your court date.With the information from your doctors an SSD case is usually easy to win.Also,if you need a quicker court date go to your congressman and they will give you paper to write down what is wrong with you and that you need a sooner court date.My congressman got me a court date within 60 days.
Paulette
(105 of 381)
Any advice on how to live with chronic pain?
Feb 28, 2004 06:47 PM
Hey Paulette,

Yes, they already turned me down twice and have an attorney now. Applied orginally Oct 2002 so been a long wait. Almost through the waiting period for the hearing now so just waiting on a date now. Hopefully will be approved this time. Doesn't help with my doc though, just changed primary docs because last one would ask at one visit if I was working or not then reply, great, you shouldn't work, then next visit he'd be all over me about why I wasn't working. Couldn't make up his mind. This new doc doesn't even want me to attempt to try going back to being a cashier/stock person. Said it's way too much for my back. She's not even sure at this point if I could go back to data entry work as I'd have to have so many breaks during the day to stretch and make myself comfortable (anyone know of an employer who'd let me key from the floor? lol). The main reason they keep turning me down is my age (I'm almost 38) and they say I should be able to handle lifting up to 50 pounds and standing on my feet 8 hours a day. (I wish!) Anyway, hopefully, it's almost over and I can worry about other things for a change instead of how to supplement my hubby's income and can concentrate on how to get myself better and taking care of the kids and the house and all the other stuff I haven't been able to do fully since all this first started.

Enough of my rants for now....sorry to go on and on, been a long day and have a cold on top of everything else.

Y'all have as good a day as you can make it!

Angela
(106 of 381)
Any advice on how to live with chronic pain?
Feb 28, 2004 07:56 PM
Hi Angela,

The only suggestion that I have as far as paying for
acupuncture is that my acupuncturist does alot of trading
and bartering of her services. Many of her clients
will bring her homemade items or food and she has several
that trade out with massage therapy etc. I hope that
you find some much needed relief from your constant pain.
(107 of 381)
Any advice on how to live with chronic pain?
Feb 29, 2004 08:48 AM
Dear Judith
On your free time,search "Kombucha" on the inter net.
I am a senior (73) and tried alot of helpful advise
but owning a Kombucha,may not answer all your question,but it will a great benefit to your over all health.Us you know,where there is one misfunction in our body,there are many more connected.
Take care of your whole body and life style.
Wishing you a new and healthy start
Anneliese
(108 of 381)
Any advice on how to live with chronic pain?
Mar 3, 2004 02:15 PM
Hi Angela,
If you go back to work you will never get disability,they will use that to say that you were able to work and that you do not need assistance! Stick with a doctor that is on your side and will fight with you. You are always sent to a disability doctor that no matter what will say that you are able to work even if you cannot. Once this is all over(and I know that it is a long wait) they will back pay you for the time that you did not work. Do not give up just because it is REALLY hard. I know how tough it can be,but if you just hang in there everything will work out. No matter what I have had to go through it has for me. Do not forget to appreciate your husband,because you are very lucky to have someone to help you through this. My dog is very cuddly,but she cannot help me financially!
Oh,feel free to "rant" you deserve to!!!!
Paulette
(109 of 381)
Any advice on how to live with chronic pain?
Mar 4, 2004 04:22 AM
That I do Paulette, I cherish my hubby greatly since he's been so great throughout all this. Before the back problems started, I battled female problems off and on for several years before the doc (and the insurance company) finally decided it was time for a hysterectomy. Besides having my kids & finally marrying the man of my dreams (it took him 4 years to convince me that it was the right thing to do), that was the BEST thing I've ever done! lol

I've decided not to even attempt to try to go back to work right now. It's just too difficult to look after myself each day and now I have a mother who needs looking after as well (not quite sure how I'm even going to try to attempt this one yet) to even have the energy left over for a job. I used to love the job I had but managed to lose it because of a darned broken tooth, of all things. ARghhhhh....it's just been one heck of a week and I'll be glad when this one is over with! lol

Y'all take care!

Angela
(110 of 381)
Any advice on how to live with chronic pain?
Mar 7, 2004 08:29 PM
What I would suggest is all of you suffering from pain and ailments... go visit www.love4xango.xangoweb.com
this product is amazing and has helped so many people, go look at the site and if you have any questions at all, please email me!!
Hope this helps!
(111 of 381)
Any advice on how to live with chronic pain?
Mar 9, 2004 06:25 AM
Hi Rocken01,

Just what does that do? Does it help with pain or is it just an overall feel-good kind of product? I looked at the site but didn't see what kind of benefits it would have besides helping with energy. Maybe I missed it.

Thanks!
Angela
(112 of 381)
Any advice on how to live with chronic pain?
Mar 9, 2004 06:49 AM
It does help with pain, my friend had back surgery about 2 years ago. And unfortunatly the surgery did nothing for her except cause more pain. She has been on numerous pain meds and she started taking the mangosteen juice and has been able to cut way down on her pain meds and she doesn't have hardly any pain anymore. For testimonials on this product please visit www.mangosteenmd.com it has alot of info on different illnesses and ailments.
If anyone has any other questions feel free to email me, and I can answer any questions that you have. Thank you!
(113 of 381)
Any advice on how to live with chronic pain?
Mar 12, 2004 01:07 AM
Hi Angela,
I just wanted you to know that I am still here and I hope that you are doing O.K. Since I last wrote I found out that my surgeon had put in jaw implants that were not approved by the FDA. He also gave me radiation treatments,medication to remove calcium from my bones and never did follow-ups. I passed out in my doctors office today because I was in so much pain.He had to cut into my jaw because he thought that it was inflaimed due to fluids,but it was the titanium post coming out instead. It had broken through my skin. He put me on extra strong medication that is working better then taking 12 vicodin I had been taking that was not working anyway. I feel a little better now. I talked to a lawyer today and he is going to send me to another lawyer that represented the other person that my doctor did this to. I am very angry that my surgeon could do this to anyone(especially me)!
Anyway I guess it was my time to RANT!! Sorry it has been a very rough week. I am sure that next week will get better.
Somewhere along the way I lost your Email,so I decided to come here to let it all out.
Sorry everyone and I hope that your week has been better.
Paulette
(114 of 381)
Any advice on how to live with chronic pain?
Mar 15, 2004 08:42 AM
Hello everyone it's me! ;) I cannot say I am doing much better. I am on pretty strong pain medications now and I don't like the way they effect me. I just don't know if it's the pain meds. or all that I have been through that makes me very hard to get along with alot of the time.

My poor husband, he is supportive but doesn't understand chronic pain and how it effects you. I take percocet, darvon and robaxin. Not to mention klonopin for anxiety and paxil for depression. I have gained even more weight and that has me VERY down. I don't like to go out in public because of my weight and the way I feel from my meds.

I am waiting to hear if I have been approved for Social Security Disability to have until I get better. I have seen the judge and am now just waiting for a determination which could take up to 6 months. We are also stressed about money. It's all just pretty bad right now.

I wish I had better things to report. I will go back and catch up on all the new post. Yes, we have our own little support group here which is great. I also found out I have Fibromyalga. It's good to hear from all of you. It helps.

Hugs, Judy
(115 of 381)
Any advice on how to live with chronic pain?
Mar 15, 2004 04:07 PM
Hi Judy,
I too have fibromyalgia and that is usually a result from the chronic pain. There are also support groups out there for fibromyalgia. If you can get your husband to go to one he will see that you are not crazy. My now ex-husband went with me and though I think that he had believed me before,he was really shocked to find out that alot of those people had the exact symptoms. I always forget things and that is what he had the hardest time believing,but when that was one of the problems that most people were talking about,he was convinced that I was truly going through it. I think that there should be more support groups for the spouses of people with chronic pain and there would be less divorces. It is almost as hard for the spouse to deal with. The grumpiness is a result of the pain,the medication,and the stress that you are going through. When you find out that your life has to change due to having a illness it is very hard. Do not try to keep it in because when your stress does finally come out it will be way worse. The people who are the closest to you always get it the worst because you trust them the most and they are in the line of fire. Try not feel guilty,because that only brings on more stress. It usually does not take as long as they say it will for disability to make their decision. Hang in there and if you have any questions about fibromyalgia just ask,I have had it since I was a child,have written a book about dealing with it(has not been published yet)and maybe I can give you some info.
Hope you feel better soon,
Paulette
(116 of 381)
Any advice on how to live with chronic pain?
Mar 19, 2004 09:46 PM
Hey Paulette,

Big hugs, hon for all that you've been through. I'm glad you're getting an attorney to help fight the horrible, horrible person who did this to you! I hope they make him live up to his responsibility and he has to pay you back and make a public apology for hurting his patients instead of helping them.

I agree with your response to Judy regarding support groups for spouses and family members. They deal with just as much as we do and are just as helpless sometimes to do anything to help us. And they are the first line for us to lash out at when we're having a bad day. My hubby is getting together with guys he works with who've gone through the same thing. They haven't actually started calling it a support group yet, but I think they will. It's helped him a lot to deal with my anger issues and his sense of humor is returning now. His sense of humor has always given me an way out sometimes so I didn't have to deal with things. He'd tell me a joke and get my mind of my hurts for awhile. Even a minute is good. If they get it all to work out well for them, I'll ask him how they did it and post suggestions for you if you'd like on how to form a support group for family and friends. These guys are even going to include me as they said I'm the reason they're together in the first place...when hubby gets to point he can't take it anymore and doesn't want to yell at me, he'll call one of the guys to come stay with me while he goes out for a bit to blow off some steam until he's ready to come back. The benefit I get from this...I get to meet the guys he works with and the ones he's made friends with. It's been rather interesting at times. :) It gets all our minds off what is bugging us too so we can actually have a halfway decent evening. Hopefully the other wives or girlfriends will be joining in as well.

My email is tenderfoot@columbus.rr.com if ya want to write again, I love hearing from you! If anyone else wants to write too, please feel free. The more friends, the merrier!

Take care everyone and try to have a good weekend!

Hugs,
Ang

(117 of 381)
Any advice on how to live with chronic pain?
Mar 19, 2004 11:24 PM
Hi Angela and everyone,
I finally got some of my info from the hospital,but it turns out that they were just as involved as the doctor and I had no idea. By the time that I had received my paperwork they had let the doctor go through it and he had taken out 4 surgeries and had added more paperwork. One of the documents said that I was despondent before I had my surgery. If that is true then why would he go ahead and give me the surgery anyway. I think that he only hurt himself with that one! He also put in a page that said alot of bad things about me. There was a page in there that was supposed to have been written by a Social Worker a few hours after I had just had an 8 hour surgery. It said that I was sitting up in the bed(a hard thing to do after having 2 ribs removed)and that I had basically told her my life story(with my jaws wired shut and my head the size of a basetball). It said that I was using my health issues to gain attention because I did not want to deal with my emotional abuse(who abused me I do not know). It also said that I was 31(I was 32),that my husband had filed for bankrupsy(5 years prior and before I knew him),that I was getting money from my books that I had written(I had not written them yet and they were never published)and alot of other mean and very hurtful things. That surgery had taken place in 1995 and he started to date it 20 and then realized that he had made a mistake and then stopped. My new doctor is telling me not to take this personally,but it is hard when I am being personally attacked.
Anyway sorry about that,but I needed to get it out it is making me feel sick!
I am sure that by the time this is all over he will feel the sting anyway and that will be enough for me.

Thanks for everything and I will write you soon Angela.
Everybody take care and do not give up,I beleive it will all get better for all of us good people!!
Paulette
(118 of 381)
Any advice on how to live with chronic pain?
Mar 20, 2004 06:18 AM
Hey Paulette,

Oh my gosh! I don't know how doctors can do that to people! Makes me soooooo mad. ARGH! Doctors take that oath to help people, not hurt them. Sounds like your doc was just in it for the money and the prestige he thought it was going to bring him by doing experimental surgeries, the patient be d****d. I could probably go on all day about bad docs but I won't. I just hope that when your new doctor is done that you'll be a new you or at least be feeling much, much better!

Hugs to you for all you've been through and all that's yet to come. I know you have a long road in front of you yet, but you'll make it! You seem to have that inner strength that will get you through. Remember, when life gets rough, come here and we'll help you through it!

Hugs,
Angela
(119 of 381)
Any advice on how to live with chronic pain?
Mar 20, 2004 11:57 PM
Thanks Angela,
It is so nice to have someone like you who can truly understand.
I did not mean that I have gained weight. I have actually gone down to 95 lbs. It is getting really hard to eat because the medicine(antibiotics) that I am on are making me so sick! If I do try to eat anything(like the bannana that I thought would be soft)it pushes out the post and my wound opens up. My new doctor is afraid to send me to a surgeon until he is exactly sure of what is going on. He saw all of the paperwork and said "see this is was makes me angry. You have all of these objects inside of your head and if a surgeon sees this he is just going to want to operate again. I think that you have already had too many surgeries and I do not want you to have to have any more. When I wrote 40 on your paperwork to another doctor,I had to write yes 4-0 or they would not beleive me". I understand that he is worried about me having more surgeries,but I do not really see another alternative. The implants are going to have to come out and soon,or they will come out on there own. I looked up others who have had this surgery and I was shocked at what I had read. Some of the patients implants just came all of the way out before they could get help,most doctors did not beleive them whwn they had told them that they were in pain and worst of all many had committed suicide. I hope that when this is all over I can start a support group that helps people who are going through this. Is is like living in hell and it is way worse when even your own relatives do not believe you! I have no dought that both my attorney and my doctor blieve that I am going to win this case,because they are treating me like gold. When I first went to the doctor before he knew that I was one of the studt patients,he would not even give me samples of medicine,because he said that he did not have enough and now he has 20 years worth and says don't worry about it I can get you all that you need. Suddenly everyone wants to help me and they are sooo nice! I just cannot wait until this is all over and I can get on with my life.
Anyway, there I go again. I reallt hope that you are doing O.k and I think about you alot. Someone as kind as you desearves to feel great. Oh and by the way,where is the hubby store where you got your very nice one. If I get some money I would really love to go and purchase me one! My old one now wants me back of course,but maybe I can make a trade-in for a new one at that store.
Take care and stay well!
Paulette
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