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anonymous Questions / Survey ~ Please Respond June 23, 2009 9:52 AM

As I was writing in the other discussion, it dawned on me we really need to get each of you more involved when you have time.

Here are some ideas, questions and so forth that may open a door for you and have each of us, help one another with information we have.

Anyway, I want to ask everyone here, if you come upon any information from new legislation about Chronic Pain, to new research, your own good news of things that help, or stuff that makes it worse... how it effects you... how does the pain alter your daily life? Do you have problems sleeping? Does exercise help? Does heat or cold make it worse? Is there certain things you eat, drink, come in contact with that makes the pain better or worse? What are your thoughts about pain specialists? Do you go to a pain doctor, or does your family doctor take care of your pain issues? What types of pain do you live with? Nerve pain, joint pain, headaches, pain from a chronic illness, pain from an accident? Is it to the point your pain is daily, and if so, are you on long term, extended release medications? If so, are your meds working properly enough you have relief? Do you have a difficult time getting your medications, for instance from your doctor, from insurance not wanting to cover them, from your local pharmacy? How many different medications have you been put on, other than regular pain medications? Like anti-depressants, some of the other stuff like Lyrica, anti-seizure medications and so forth? Have you tried physical therapy, alternative things such as accupuncture, chiropracters, herbal therapies, and if so did they work, not work, or make things worse?? How long have you been a pain patient? What kind of pain do you have? Do you make many trips to the ER with pain problems? How does pain effect your relatioships, job, home life, hobbies, kids, schooling and so forth? Does the pain cause you to be down and out mentally? Is the pain constant or waxes and wanes? Are you satisfied with your doctor, medications, and treatment? Do you feel like some people think you are an "addict" because you are on pain medications? Has any doctor made you feel like the pain is all in your head? or has a doctor or ER made you to feel like you are a drug seeker, rather than a true pain patient? Do you keep a pain diary? Okay... LOL, just many things I can think of that can lead us to new discussions.

We await to hear from some of you when you have time. Maybe we can find some new answers in what others of us post...

More later and have a great week.... Pam

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C.C. Schenk July 10, 2009 4:41 PM

HOW DOES PAIN EFFECT YOUR DAILY LIFE?

Chronic daily pain has effected every aspect of my life, and has essentially changed who I am all together. I am certainly not the person I was 6 years ago due to pain.

DO YOU HAVE PROBLEMS SLEEPING?

Yes. I was put on Trazadone 100mg to help sleep yrs. ago and now am up to 200mg. This helps better, but there are still times I awake due to pain and uncomfortability and have trouble going back to sleep.

DOES EXERCISE HELP?

In my case, I have tried to exercise, but, it is virtually impossible due to pain in most areas of my body due to different disabilities.

DOES HEAT OR COLD MAKE IT WORSE?

As far as air temperature, cold is worse for all my pain from neuropathy to arthritis to fibro...hot air is not as bad on the pain, but, I am totally non-energetic from CFS. As far as hot or cold compresses, a heating pad on the highest heat does help while laying on my back on it, but the pain re-appears as soon as I get off it.

ARE THERE CERTAIN THINGS YOU EAT, DRINK, COME IN CONTACT WITH THAT MAKES PAIN BETTER OR WORSE?

Eating and drinking a well balanced diet definately helps with pain and energy, but I am unable to do so mostly due to extreme low income (still awaiting disability)...with prices today, it is virtually impossible to eat fresh, healthy foods all month long. Regular sleep and a daily nap definately helps my physical well-being.

WHAT ARE YOUR THOUGHTS ABOUT PAIN SPECIALISTS?

I have none personally because I have yet to go to one in the 6 yrs I've been in pain (due to medical coverage being constantly taken away from me)

DO YOU GO TO A PAIN DR. OR FAMILY DR.?

Family Dr.

WHAT TYPES OF PAIN DO YOU LIVE WITH?

Pain from Fibromyalgia, Chronic Burrcitis, Osteoarthritis, Neuropathy, Chondra Malacia Patella...undiagnosed Spinal issues, Osteonecrosis.

IS IT TO THE POINT THAT YOUR PAIN IS DAILY? IF SO, ARE YOU ON LENG-TERM , EXTENDED-RELEASE MEDS?

My pain is constant...I take Lyrica 3x daily and flexiril @ bedtime and vicodin 2x daily, that's it.

*to be continued due to pain from being @ puter too long *

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continued... July 11, 2009 7:28 AM

IF SO, ARE YOUR MEDS WORKING PROPERLY ENOUGH THAT YOU HAVE RELIEF?

My current meds do give me some relief, but I still continue to be in chronic pain...The vicoden is necessary and helps the most, but, makes me even more 'uncapable' (sleepy...basically - drugged!)

DO YOU HAVE A DIFFICULT TIME GETTING YOUR MEDS?

I have due to the fact that I am not 'officially disabled' by the state and my son has 'special needs' and has not always been in my home in the past 6 years...meaning, the state wud take my Medicaid away when he was not officially living with me. My disability lawyer fought it and we did win...2 yrs. later, so I do now have Adult medicaid for the Disabled.

WHAT OTHER MEDS HAVE YOU BEEN PUT ON BESIDES REGULAR MEDS?

I am assuming that you mean meds besides Pain Meds...Yes, since the onset of my disabilities, I have suffered Severe Depression and Anxiety. I take Abilify, Celexa, Visteral and Trazadone.

HAVE YOU TRIED PHYSICAL THERAPY OR ALTERNATIVE REMEDIES SUCH AS HERBALS, ACCUPUNCTURE, CHIROPRACTIC, ETC?

I had physical therapy years ago before things got worse...my current dr. has not sent me...Due to my current financial hardship, I am unable to afford the vitamins and herbals that I wish to try...once my settlement comes in, I plan on trying more of the natural 'relievers' that we have posted here.

HOW LONG HAVE YOU BEEN A PAIN PATIENT?

6 years

WHAT KIND OF PAIN DO YOU HAVE?

Well...I guess I'll go from head to toes here...regular headaches, fibro pain w/ back/neck being the worse,  pain in shoulder blades from chronic burrcitis and rotator cuff syndrome, spine/middle back pain from undiagnosed spinal problems, both hips from Avascular necrosis, both knees from osteoarthritis and Chondra malacia Petella in r. knee, r. claf and foot pain from Neuropathy (where dr. cut nerves in surgery)

DO YOU MAKE MANY TRIPS TO THE E.R. WITH PAIN ISSUES?

I used to go often, but do not anymore because they do not do anything but tell me to go see my doctor...

HOW DOES PAIN EFFECT YOUR RELATIONSHIPS, HOME LIFE, HOBBIES, KIDS, SCHOOLING, ETC?

Well, pain has definately effected all of the above...I cannot do anything with my old friends because they are physically active, I am unable to work for the past 6 years, I am home-bound entirely too much and rely on the tv mostly for entertainment as opposed to the out-of-the-house active person I always was before, I cannot participate in the hobbies I enjoyed the most (canoeing, kayaking, camping every weekend in summer, walking, running, bicycle riding), I know my son was effected when I could no longer go outside and shoot hoops or throw a football with him, I am hoping to return to college in August, but this might just be a dream because I don't think i can handle the load.

DOES PAIN CAUSE YOU TO BE DOWN-AND-OUT MENTALLY?

Most definately.

IS THE PAIN CONSTANT OR WAXES AND WANES?

Pain is constant with 'bursts' of worse pain.

ARE YOU SATISFIED WITH YOUR DOCTOR, MEDS AND TREATMENT?

Not at all with either of the above.

HAS ANY DR. MADE YOU FEEL LIKE THE PAIN IS ALL IN YOUR HEAD?

Yes...and the disability board is more interested in my 'mental state' than my more than real 'physical pain'.

DO YOU KEEP A PAIN DIARY?

I used to, but, not anymore...I know I should.

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 July 11, 2009 7:22 PM

How Does Pain Effect Your Daily Life?

          Pain does effect many aspects of my daily life and at the moment I am coming to terms with the fact that I will just have deal with it for the rest of my life,24/7.Heavy stuff mentally!!

Do You Have Trouble Sleeping?

           I can't sleep more than a couple of hours at a time due to pain in back, legs and arms.I think it may also be due to menopause.

Does Exercise Help?

           My body constantly feels stiff and sore but stretching every half hour or so does seem to help.I find it necessary really.I don't mean a workout or anything,just walking and stretching.

Does Heat Or Cold Make It Worse?

           Cold definitely!!

What Are Your Your Thoughts About Pain Specialists?

            I use marijuana for pain as I have found it to be the most effective,in not necessarily taking the pain away but certainly helping me to deal with it.I tried many different meds and found they all made me feel nauseous and depressed,even suicidal, so choose not to use them.In Australia marijuana is illegal and my experience with doctors and specialists is that they are too conservative and was recently told  by a specialist not to mention it to other doctors in the hospital as I would not been taken seriously.Although I have not seen a pain specialist,my experience with medicos in general does not give me much faith.

What Types Of Pain Do You With?

        I have Degenerative Disc Disease which affects my whole body.I've had surgery on my neck and have 3 disc bulges in my lower back.I don't know what type of pain I have,all I know is that it hurts!From head to foot!!

How Long Have You Been A Pain Patient?

         I dislocated my cervical spine 30 years ago,and have had neck and arm pain since then.Although now my back is bad as well and as I age the condition just gets worse.

Does Pain Cause You To Be Down And Out Mentally?

         Pain has driven me to the point of suicide!I must say though that since I got my first computer and joined care2 a few months ago I have been feeling much better.A support group really helps.I think that only people who are experiencing the same thing as you can truly understand and empathise.

Is The Pain Constant?

           It never,never,never goes away!So I have come to the decision that I will do whatever I want and not be held back by it.This may sound strange but the truth is that it doesn't matter what I do the pain is always there so I must find things that enrich my life so that I can feel happy.Happiness is the key for me in dealing with pain.

Are You Satisfied With Your Doctor, Meds And Treatment?

             I could go on all day about my experiences with the medical world but don't want to bore you as I'm sure you would already know.Most people I talk to with chronic pain and also choose to use marijuana are not treated very fairly.I hate being judged when all I'm doing is trying to have a decent life.It's bad enough living with pain but to also be discriminated against is unjust.

Do You Keep A Pain Diary?

         No,I don't.I try to live one day at a time.

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Be your own health advocate July 13, 2009 7:03 PM

I hope to write more later about my on going battle with pain but for right now I want to warn people about a drug that almost killed me. It stopped my breathing then my heart and left me me on life support for 8 days. They told my husband it might of been a suicide attempt or accidental overdose. It wasn't either. Every pill was accounted for and there was no excess in my blood to account for my collapse. If he hadn't come home when he had to do CPR I would have died. They thought I had permanent brain damage and was in a permanent vegetative state and were waiting until my children flew home to turn off the machines. As it turned out I came out of it just hours before the time was set.

At least 6 different doctors looked at my chart including 2 or 3 Doctors of Pharmacology and it wasn't until I got home and did some research of my own did I see that the Lyrica they had given me should never have been given with at least 3 of the other medications i was already on. Right on the Lyrica WEB site it said it could and has caused respiratory arrest and even death.

I know some people have trouble with people who need high doses of pain medications but without it I have no quality of life. I have twice undergone medical detox and tried other methods of pain control. I have a severe curvature of my spine. Avascular Necrosis in my hips ankles and especially my knees. They no longer bend at all and after 10 years of physical therapy, facet injections, 6 knee surgeries including a Right Total knee replacement and now non diabetic neuropathy in my right foot that feels like someone is twisting barb wire around my knee and ankle I am on Kadian 50 in the AM and 80 at bedtime and I refuse to ever apologize for my need for narcotics. Or sleeping medication. Without pain drugs I can not sleep or even leave my bed. With them I get no feeling of euphoria or of being stoned. What I can do is visit with my grand children, travel to see my family, read, sit at my computer. No Drugs No meaniful Life. I am not suicidal on drugs. Without them I could see no reason to keep on suffering. Until you have my unrelentless pain 24 hours a day please don't judge me. If you have terrible pain I am so sorry for you. No one deserve it but you will not make me feel bad for using them.

Sharon

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response to Sharon's post-Be your own advocate July 14, 2009 3:35 PM

Sharon thanks so much for sharing last night.

I am so sorry to hear about your recent experience with Lyrica.  Wow--scary that they were so close to pulling you off life support and you woke up!  I can't imagine how you must feel.

Lyrica is a serious medicine and. like any med, should be monitored carefully when you first start taking it--and AS ALWAYS it's important to check for interactions with your other meds.  your Doctor and/or pharmacist should catch those things.
we can all learn from your experience.

As far as your pain meds go....I would imagine that this is the last group of peoplee who would judge you for the meds you are taking.  I can relate to what you are saying though. I h ave been on lots of different meds and large doses at that. I have felt judged by many people including my family.  I am a nurse......worked in critical care for most of my career.  I can honestly say that even though we have pain management doctors now (thank goodness) Most drs and nurses are extremely undereducated about pain management and many of them are very judgemental about pts who need strong pain meds.  I have experienced it when I have been to the er In the hospital for whatever reason.  And I definately saw it when I was working......pts always being labeled a 'drug seeker'.  It is such a shame.  ON top of everything else we go thru to have to deal with that as well.
It really is hard for people to understand if they haven't been there.  That's why groups like this are so good.  Even our most supportive family/friends just can't understand like someone else who has been there.
You have no need toworry about being judged here or anyone trying to make you feel guilty.  I have been on Morphine in the past that didn't help much......took large daily doses of oxycontin for a long time (people REALLY get judgemental about Oxy) and have taken Dilaudid as well.  I now have an intrathecal pump with Dilaudid, Clonidine and Bupivicaine and I take roxycodone 4 times a day for BT paiin.
I, like you would not sleep or have any quality of life without my pain meds.  As it is I only sleep 3-4 hours and that is with pain meds, ambien and klonopin. Before I had the pump and my pain was at 10 plus everyday, I got to the point where I just lay in bed and cried everyday.  I really didn't feel like life was worth living.  If not for my family I don't know what I would have done.

Again, thank you for sharing and please continue to post nay ideas, links, questions, prayer requests or just whatever!
Hope you are having a good day.
Kim/VA
co-host

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response to Fay July 14, 2009 3:51 PM

Fay
thanks for sharing your situation with us. 

I can so relate top what you said about having to accept that you will be dealing with this pain forever.  when I first started having problems I thought "they will find out whats wrong, fix it and then I'll be fine"
After awhile of finally getting my diagnosis, going thru all the injections and other procedures etc I started tp realize that it wasn't going to go away probably ever.  the only thing to hope for is some level of relief. It's a very hard thing to accept.

I, Like you have struggled with depression a great deal.

I  also have contemplated using marijuana for pain in the past.  I used it alot in the 80's as a teenager and never thought I would use again but pain can make you do lots of things you don't think you will do. I'm sorry you haven't had good experience with pain meds or the medical profession in general.  My first pain dr was AWFUL.....condescending, rude, uncaring and totally inept with procedures.  When he did injections he would have to stick me over and over and then still didn't get it sometimes.

I cried and cried because I thought he was my last hope for some relief.  thank goodness I found a new pain dr who was willing to take me and he was totally different. I have had a great experience with him and have been his pt for 6 yrs now.

I'm so glad you found Care2.  I'm also glad that I found care2.
It definately halps to have someone who understands what you are dealing with and doesn't judge.

If you have any ideas for the group please let us know. we want this to be a helpful and supportive place for all of us.

Hope you are having a low-pain day
take care and God bless
Kim

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 July 28, 2009 3:25 PM

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 August 07, 2009 4:31 AM

This survey helps us help you

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 August 21, 2009 1:04 PM

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 August 28, 2010 11:24 PM

Newest members...

It would be great if you had the time & ability to complete Pam's survey...

It helps us help you

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