HELLO everyone seems Im among friends who understand

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New Member

Date Joined Jul 2011
Total Posts : 17
   Posted 7/14/2011 10:18 AM (GMT -6)   
  I have posted a few replies  but didnt introduce myself.. I am a retired married woman who lives in the beautiful mts of MT. I live with almost constant pain am I am getting so discouraged with drs. They first said it was my bladder then pelvic problems  then back problems  Each specialists thinks the pain is caused by a different thing.. Then " its all in your head because we have lost 2 of our children  . Our daughter ,34< was killed in an auto accident  then 2 weeks later our 18 yr old grandson in a wreck  , then our 42 yr old son died 1 yr later from Brain cancer. But   .....my pain is REAl.. It interferes with my life..But because of the grief they dont beleive me.. I so appreciate having a place where I can "let it all out  " ty ty ty  I havent figured out exactly how to do this  so please be patient with me  I am kinda new at this laptop stuff  Good morning to you all

Veteran Member

Date Joined Feb 2007
Total Posts : 553
   Posted 7/14/2011 11:19 AM (GMT -6)   
Good morning to you!
I am so glad that you have found us.
The first thing that I thought of when I read your post is that you should read a book called "Me and my pain". I read it and it deals with many of those same issues. I found it through Barnes and Noble in the online books.
Next, I want you to know that those Doctors, while they may be doing the best they can, get discouraged too when they cant figure out whats wrong. Then they turn to psychological explanation that regular medical doctors arnt really going to understand. Only a psychologist or phychiatrist can tell you it truly is emotionally based. Keep working on them, or find the next one.
Many of the people here recomend finding a teaching hospital because the people there are more open to figuring out complicated Dx. I think it is great advice.
You have to be your own advocate when dealing with chronic pain, expecially if you dont yet know whats causing it. I suggest holding a full paper copy of you medical record, from all the doctors, and carrying that to each new visit. Get assertive and start asking questions. The book has a great explanation on the diffrence between dr/pt relationship in short term conditions, and chronic conditions. Expecially those that cause pain and require the dr to prescribe med that he is uncomfortable with.
Keep posting. Vent. Suggest soulotions to others, or just comfort which is really more important. I haunt more than I post, but for the most part I come every day, sometimes several times a day.
"Life seems a little easier when you remember to breathe"

Dx: Rheumatoid Arthritis 2008
Bipolar 2 2006 (symptoms since 1993)
possable Fibromialgia (still ruling out other dx)
Gluten senitivity 2010
Sleep apneia 2007

Forum Moderator

Date Joined Feb 2003
Total Posts : 16796
   Posted 7/14/2011 11:24 AM (GMT -6)   
Good morning Kimshee, so far you it appears you are doing great with your laptop, keep up the good work. I don't remember seeing any posts from you, but I have been MIA a lot lately due to internet problems which are still not resolved. I hope I am able to finish this post before getting booted.

First off, I would like to welcome you to Healing Well's chronic pain forum. I am very glad that you found this forum. It has a lot of great caring people here that do understand all about chronic pain. I am very sorry to read about your losses, thats just so much to deal with, then having the problem you are with drs is just not right. All I can say, is you are one very strong person to have managed this far. With that thought in mind please keep searching for a dr until you find one that will listen to you. You deserve to be treated as a patient that suffers with CP. Sad but true many times we do have to advocate for our own care. The medical community is a lot to be desired these days. There are some good drs out there its just a matter of finding them. By chance do you live by a teaching hospital? Many times people end up at a teaching hospital simply because they cannot get some straight answers out of their own drs. If you will look in CP101 I believe there is a list of teaching hospitals and perhaps one will be close to you. I just find it incredible that you have been treated as you have, rather your lack of treatment. You know your pain and it is just that your pain and for someone to lay it off as grief is just flat wrong.

Yes, coming here and getting things off your chest is one of the neat things about this forum. All of us need to vent for one reason or another, so keep venting away.

Anyway, I wanted to pop on and say welcome aboard and hello. Please keep us posted on how you are coming along. Take care.
Moderator Chronic Pain Forum

New Member

Date Joined Jul 2011
Total Posts : 17
   Posted 7/14/2011 1:40 PM (GMT -6)   
thank all of you who replied to my post.. I guess i really needed the encouragement. I have a wonderful. loving husband but he really doesnt understand cp..He likes to go places and do things that we can afford.. Llike short rides( because of gas prices we dont go too far ) into the mts and picnics on the lakes but those set off my pain and he is just trying to make me feel better in his way by getting us out of the house. We have very long cold winters here and need to enjoy the warm weather when we can.. I love to do those things too, but after about 15 minutes in the car i am in bad pain and i dont like to take extra meds as then i run out.I am going to read all the other posts. everyone is so encouraging and brave..i appreciate the advice from those who understand and will look into all the new ideas Thank you very much..

Veteran Member

Date Joined May 2011
Total Posts : 636
   Posted 7/14/2011 2:02 PM (GMT -6)   
Welcome to HW kimshee, you will find tons of support here. I havent been around to long but have been welcomed with open arms by everyone.

My brother is dealing with an undiagnosed dx right now. Some say rapid onset dystonia parkinsonism, others say, phospolipid antibody syndrom with chorea, and others say it is conversion disorder. The third being physical but induced by a traumatic event, but treated psyologically as well as physically. It is very frustarting when they cant tell you WHY!

In my case we dont know why I am the way I am but I have several dx's that can all have the same symptoms. Anyway enough about me,lol.

As for spouses, I have not yet figured out how to get him understand, but you will find people with lots of advice and support here. Sometimes it helps just to know that you are not alone.

Welcome again!

Big hugs,
DX: CRPS/RSD full body, Fibro, CP, DDD, DJD, OSA, Syringomyelia, Arachnoiditis, failed fusion. Fusions C5-6, L5-S1, hardware removal and removal of scar tissue. SCS trial successful awaiting placement.
MEDS:To many to mention, changes every week it seems.

New Member

Date Joined Jul 2011
Total Posts : 17
   Posted 7/14/2011 2:20 PM (GMT -6)   
ty shell I feel better already since I found this site yesterday lol Not so alone.. My d-in- law thinks i should be out hiking She has friends in their 80s who do ...Of course she is only 28 and in good health doesnt know what getting older is like yet lol We are in our 60s but hiking is out of the question She doesnt understand and thinks i am just lazy I walk some everyday and do the best i can Pain takes the fun out of life.... As i said my husband is very patient but doesnt really understand And he has his own probs as well COPd and has had open heart surgery But except for the coughing he doesnt have cp which I am so very thankful for... ty for your reply

Screaming Eagle
Veteran Member

Date Joined Sep 2009
Total Posts : 5005
   Posted 7/14/2011 2:34 PM (GMT -6)   
     Hello Kim!
           Hey!...you made it!....sorry I'm getting back to you a little late here, but I was thrilled to see that you found the correct place to post you're introduction.
        First off!...Welcome to the Chronic Pain Forum! ..as you can already see, we have a wonderful support group here! It looks like you have recieved some excellant advice from just a few of our members.
      I'm going to just add a few tips for you, and let you roam around. One thing We always encourage, new members to stay engaged with the members here. You will get out of what you put into it, and trust me there is a wealth of information, not to mention the many, many friends you will make for a lifetime. I love the members here, and some of my best friends in life reside here!
      As mentioned, please take the time, and take a peek at the "Chronic Pain 101" ..located at the top of our home page. You will find a wealth of information there, and some tools to help you gage your pain scale, and a journal you can print and keep daily records of. This can come in very handy when your dealing with a PM (Pain Management DR) ....here are the links for you to click on.
Pain scale: http://www.wemsi.org/painscale.html ...check it out...it's a great gage of your pain!
Teaching Hospital's: http://en.wikipedia.org/wiki/List_of_university_hospitals ...Highly recomended for tough to diagnose DX's
    ...another item found here, and well worth the effort and time is the "Search Button" located in the upper righthand of this page. I personally have spent many, many hours researching topic's on the forum, using this neat little feature. Simply click the button and type in your word/words of interest, and watch the magic!
         ...and finally, while I'm thinking about it, please take a moment to read through the "Forum Rules" located at the top of the home page. It just might save you some embarressment one of these days. They are really comon sense rules, and easy to follow.
     I'm so glad you found this site, and I trust you will enjoy the fruits of your diligent search. We do!.. sincerely believe we have the best Chronic Pain support group on the Web. Period!
    I will check in with you a bit later to see how you're doing..untill then....
      Enjoy your stay with us!
     SE wink
Moderator Chronic Pain Forum

Weekly Quote!

"Snowflakes are one of nature's most fragile things, but just look at what they can do when they stick together"

Post Edited (Screaming Eagle) : 7/14/2011 2:19:59 PM (GMT-6)

Veteran Member

Date Joined Apr 2010
Total Posts : 2265
   Posted 7/14/2011 11:00 PM (GMT -6)   
Hi Kim Welcome to our chronic pain forum. As you have found out already, we have a group of very supportive and loving people here who understand chronic pain.

I'm so sorry for your losses. I have lost our four babies, so I know the pain of losing your children. It's the worst thing that can happen to a parent. There is no other pain like it.

I also advise that you contact a teaching hospital. SE was so sweet to have posted the link right here for you. Hopefully you have one close by that can help you.

You take care. I hope you're having a low pain night.

Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

New Member

Date Joined Jul 2011
Total Posts : 17
   Posted 7/15/2011 1:40 PM (GMT -6)   
 ty for your post  I am also so sorry for your loss  Life can be so hard at times  I have already received many helpful suggestions in here.. So many people are in pain..I guess all things are relative.. everyones pain is their own.. I am trying hard to figure out the best way to live with it and have some enjoyment of life.. I really believe this forum will help me  ty again

Veteran Member

Date Joined Mar 2011
Total Posts : 816
   Posted 7/17/2011 7:39 PM (GMT -6)   
Hello kimshee, I am so sorry to hear about your children, I am so very sorry, I am not sure what else to say.
As for your pain, it is real, I didnt read others replies to you, but I am sure all advised you to find a pain management doctor, neurosurgen, or orthopedic doctor.  I am sure will most likely have to get mri's, ct scan, and who knows what else.
Shame on those doctors, shame, shame, shame.  What happened to the oath which says "do no harm" I realize thats not the entire quote, but they know what they agreed to when they became doctors.  Please dont give up, I am sure your pain is real, and to treat you in that way is insulting to say the least.
Please take care of yourself, keep coming back to this forum, we all suffer with cp, when I joined in March 2011, I felt like I had found another family, and thats just what they are.  The cp forum is the best thing that happened to me for along time.
I will be sending tons of prayers to you so you can find a decent pm doctor, good luck
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

White Beard
Forum Moderator

Date Joined Feb 2009
Total Posts : 3702
   Posted 7/18/2011 12:16 AM (GMT -6)   

I also want to welcome you to our forum, I know that it can often be frustrating when dealing with doctors, allot of them don't understand pain, and they have a hard time with patients that they can not "fix" or find out what is causing their pain. Pain is such a subjective thing and many do not want to take the trouble to really dig in an find the cause! Blaming it on "being in your head" is a cop-out and many doctors use it because they do not want to do the work to find out what is really the cause of your pain! Don't give up, or give in to them, pain is what ever you say it is period! And you should not have to suffer from it! You do have family here that does understand what it is like to live with Chronic Pain! You are not alone any more! I do hope you can get some answers to your pain and some treatment for it soon!

I wish you well Kimshee!

White Beard
Moderator Chronic Pain
After spending nearly 22 1/2 years in the USAF, I retired in Sept, 1991. I then went back to school and became a licensed RN in 1994, and I worked on Oncology and then a Med Surg Unit, I became disabled in late 1999 and was approved SSD in early 2002!-- DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in Sep 2009, C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications:Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV I am White Beard with a White Beard!
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