Family issues and CP

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autunm
Regular Member


Date Joined Mar 2012
Total Posts : 71
   Posted 4/3/2012 7:31 PM (GMT -6)   
hi everyone.i was talking to my hubby about some of my chronic pain issues last night and i have always noticed that he gets flustered and cuts me off and snaps that he can't help me.what i really got upset about when i pointed this out to him was that he said that it is not possible to have 5 chronic pain issues in my body and that he believes i am making some of this up.believe me,i saw red.i said to him,why would i make chronic pain up?i said that i would rather lead a normal life without pain than make it up to get attention.my hubby and my kids have seen me suffer for so many years and to hear this,well,i just don't know what to think anymore.it just blew me away.i am under a lot of stress at home with 2 very difficult teenage kids and i know that stress can contribute to chronic pain issues but i am not making all of this up.just because test after test shows nothing is wrong does not mean i am making it all up.if i wanted more attention at home,i would not be making up pain issues.that does not make sense to me.even my parents believe that i am making things up and they have never shown any support with my twin sister and i who both suffer chronic pain.anyone else been through this? devil

Post Edited By Moderator (Screaming Eagle) : 4/3/2012 10:44:41 PM (GMT-6)


ReactiveConstellationNE
Regular Member


Date Joined Dec 2005
Total Posts : 256
   Posted 4/3/2012 8:10 PM (GMT -6)   
Alas, this is pretty much par for the course with these conditions....even though I have mountains of diagnostic proof of some of my issues, others don't fit the expectations of some of my doctors and specialists (notably the fact that they were told in med school that Reiter Syndrome/Reactive Arthritis is just another kind of arthritis that should show up the same way on blood tests as RA and have much the same symptoms, which couldn't be further from the truth; many people with ReA have "normal" sedimentation rate/CRP numbers a lot of the time even when flaring intensely, and Reiter's can attack much more of the body than just the joints....everything from all the organs to the entire nervous system, brain, eyes, etc...) and a lot of it isn't externally obvious -- which is all too common as we all know here -- so I definitely know where you're coming from, all too well in fact.

Hang in there.....only you really know the truth, and unfortunately, some people will just believe what they want to believe and all sorts of 'proof' may not necessarily convince them. This is, unfortunately, the cross we must bear....
Conditions: Reactive Arthritis (AKA Reiter Syndrome), Chronic Pelvic Inflammatory Syndrome, Sacroiliitis, Costochondritis, As Yet Unknown MS-Like Relapsing/Remitting Neuropathy, mysteriously variable digestive issues, and a partridge in a pear tree.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16796
   Posted 4/3/2012 8:41 PM (GMT -6)   
Autumn, I am sorry that you don't have the understanding at home that you need and deserve. But, this is not uncommon at all and happens much more than you realize. The men think too that they are suppose to be able to fix us, well they can't and they just sometimes can't understand much about a chronic illness. My husband was not supportive at all when I first went down with CP, he did not understand why the drs couldn't just fix me. How I try to look at it is, sometimes I don't understand this mess so how can I expect anyone else to.

You may want to take him with you to a drs appt and let him hear first hand about your situation from a professional. Just don't let it tear you down, you know you are in pain and its not something a person would want to fake for the fun of things. You know even friends as a rule can't get a handle on it.

Just keep trying to get some answers that is the important thing. Take care....Susie
Moderator, Chronic Pain Forum & Psoriasis Forum

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 4/3/2012 8:57 PM (GMT -6)   
Autumn, Straydog gave you good advise, take you hubby with you to an appointment.
I once had a doctor tell me to my face it's not possible to have more than two auto~
Immunine diseases, I don't have that doctor on my team anymore. And maybe seek out
a doctor for a possible fibro dx, or look into it..
Keep us posted as we do care, and hope you hubby can understand, soon...
Many well wishes...Maybe even consider going to counseling for couples...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

rjbeck
Regular Member


Date Joined Feb 2008
Total Posts : 255
   Posted 4/4/2012 3:29 PM (GMT -6)   
Hi Autunm,
Join the club of family and friends who just don't understand what were going thru.My problems started in 2005 with my lung collapsing and the hospital having to do a thoracotomy and removing 4liters of junk from the chest cavity and half of my lung at age 39. I spent 30days in the hospital and since then I have been hospitalized 26 times (2-3day stays) and because of the lung problems I was given massive doses of prednisone which caused another disease that has affected 6 joints that all need to be replaced..The only reason I gave you my history is that my family and friends still don't believe I have a chronic pain problem and don't understand why I can't work or go out for the evening. They keep telling me when I am better we can do this and we can do that. And when I talk to them about this being a lifelong disease they just don't understand. My brother has been to most of my doctor visits and still doesn't understand. I can't figure it out. And it always turns into some very heated arguments. My favorite response is that I want to be in pain or be disabled..It's as if I was talking to the wall.. Or my favorite response from my family is that I am DEPRESSED smhair ... You are not alone I hope you feel better Randy
P.S. This subject in my house is taboo-and if brought up World War 3 breaks out...

AVASCULAR-NECROSIS (AVN) in 6 joints. HIPS,KNEE'S and SHOULDERS-Replaced RT shoulder.Left hip 2011
Bilateral Empyema-Thoracotomy with Decordication.(Removed the Lining of left lung)Bilat Pneumothorax (2005-2008)
COPD.
Hiatal Hernia-needs repair-Severe GERD
MED'S-methadone 45mg's Bid---oxycodone 30mg's Bid--nucynta 100mg-Prn
Former Respiratory Therapist/Perfusionist

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 4/6/2012 4:02 PM (GMT -6)   
My answer to the non believers of which gladly there are only maybe two one being my brother funny thing about brothers, anyway my response is "walk a day in my shoes, then talk to me".  I wish him no harm, but Karma has a way of making things right.
 
Good luck, hand in there,
Kathy
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
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