It is not the Pain that is the Pain

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Port Mac
Regular Member


Date Joined Sep 2010
Total Posts : 70
   Posted 10/2/2010 2:57 AM (GMT -6)   
I have had pain for years and now I can put up with it. It is related to Parkinsons Disease.
The consequence of pain was a reduction of activities, not to the point of elimination. Over the years my lifestyle has changed and things that "normal" people enjoy I avoid or they have little or no interest when once they did. An example is travel, surfing and even going out in a boat.
I use to regularly take pain medication but found the following
Codine based meds after several doses gave me insomnia
Codine based meds gave me constipation that got so bad it was far worse than the original pain
Codine based meds after a few doses made me a bit silly..I would get a bit forgetful, sometimes slightly confused etc
I found meds like plain Neurofen had a short life of effect and too often made my stomach sore.
Opoid meds (low doses) would cause constipation and would sometimes not work and other times made me elated!!!
Other meds affected my ability to drive...and so it goes on!
One common thread is they loose their effectiveness if taken too often.
Pain meds taken occasionally are great.
For those that sink into depression...I did not ....but for those that are in depression I think the reaction is very normal.
I found the pain management specialist and books on the subject to be helpful but that is all. The big problem is that doctors etc have no personal experience and despite good education and intentions are of limited help only.
The fundamental issue is that if pain goes on long enough it changes your life and adapting is the problem, especially when your friends and family are fully functioning.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 10/2/2010 9:44 AM (GMT -6)   
Amen!
I've suffered with back pain for 20 years. Recently I've had a very hard time with it. My new back doctor was amazed that I've been able to handle it for that long with occasional ibuprofen, heat, and rest. I, too, had adapted my life to minimize the pain. It's like how we all learned as a child: hot=pain, so we avoid doing things to avoid the pain.
My doctor wanted to put me on Cataflam (hated the moody feeling) and Flexaril (overheated and blurred vision). Next she tried Armix (Extreme overheating-drenched in sweat and couldn't read anything more than ten feet away).
I've decided to go back to ibuprofen and do my PT exercises. Which really seem to be helping me right now.
I feel for everyone who is in constant pain and medicine can't help them. Those few minutes of painful spasms I suffer with is nothing compared with the suffering so many of you go with every minute of the day.
I just want to give everyone of you a gentle, loving hug and wish your pains away.
Joy

spinal soldier
Veteran Member


Date Joined Dec 2009
Total Posts : 687
   Posted 10/2/2010 2:35 PM (GMT -6)   
Hi Port Mac, YOU HIT THE NAIL ON THE HEAD, doctors that have not experienced any pain much less "chronic pain" which is daily and unrelenting cannot make good judgments treating chronic pain unless they have learned from a different doctor who knows it inside and out or learned directly from their patients. with doctors losing their medical license and medication diversion and the fact a doctor cannot relate to chronic pain will make it hard to find a good doctor to control your pain. the specialty of "pain medicine" should be included into a area of medicine a MD or OD can go into.
L4,L5,S1 bilateral Laminectomies, Foraminotomies 2002
L4-S1 PLIF with instumentation 2008,

current Rx: OxyContin 60mg 2x, Dilaudid 8mgs [brand] 4x p.r.n. brk., Phenergan 25mg 3x prn nausea, Lyrica 75mg 2x,Adderall 20mgs 1x A.M., Soma 350 mg 3X, Relafen 1000mg 1x, Klonopin 1mg H.S. or prn anxiety Supplements: CO-Q10 100mg, Vitamin D 2000IU, Fish-Oil1000mg EFA, B-Complex50 3x/day, GABA 750mg

antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 10/2/2010 2:52 PM (GMT -6)   
Hello Port Mac and welcome! I so agree with you that adapting to chronic pain is a huge issue! You almost have to mourn the loss of the life you once had in order to accept the life you now lead! I also agree that many doctors have no clue what it is like to live with CP! Well for that matter, anybody who has never had CP has no clue! My husband is very understanding, but I have sometimes thought if everyone who has to live with someone who has CP and the docs who treat it could truly walk in our shoes for just a week they would be more understanding and supportive! I think there should be support groups for the families and friends of people with CP. Something I am really looking into getting involved in. I would like to get into counseling for CP. But anyway, enough about what I want! Just wanted to say welcome to our family and I am sure you will find a lot of understanding around here!

Take care,
Beckey
Spinal Stenosis L3/L4, L4/L5 & L5/S1 with Nerve Impingement, Fibromyalgia, TMJ, GERD, Severe Depression, VERY Large Cyst Right Ovary causing mild twisting, Small Cysts Left Ovary & 3 Large Cysts Uterus and Possible RA

Medications - MS-Contin, Cymbalta, Famotidine and currently Prednisone

Port Mac
Regular Member


Date Joined Sep 2010
Total Posts : 70
   Posted 10/2/2010 10:30 PM (GMT -6)   
Thanks you all for your comments.
I think I will be posting regularly.

damouthy1
Veteran Member


Date Joined Sep 2009
Total Posts : 663
   Posted 10/3/2010 9:33 AM (GMT -6)   
Welcome Port Mac, I do hope you stick around. We have a wonderful and supportive group here. It helps to be able to talk to other people who know what you are going through. Take care and keep posting!
Gentle Hugs,
Shannon

Fibromyalgia, Chronic daily headaches, Migraines, Possible Graves Disease, GERD, High blood pressure, Depression and Anxiety

Oxycontin, Lopressor, Lexapro, Omeprazole, Promethazine as needed for nausea, Ventolin inhaler and Vitamin D3

MIKEL99
Veteran Member


Date Joined Feb 2010
Total Posts : 914
   Posted 10/3/2010 9:47 AM (GMT -6)   
  Hey Port Mac , Welcome you've come to right place , the people here are awesome and will support you thru anything .I applaud your courage in the way your handling your pain issues , meds can make life easier but as you obviously know the side effects can be terrible .I take it by the way you say your into your physical therapy  , that you must eat right too , because that can help , I juice every day and that has helped my pain a lot . I hope you can resolve these pain issues somewhat I wish you the best of luck . Mikel
HIV+. meds - epzicom, Kaletra . oxycontin as needed , indothemiacin . hip replacement surgery done !!! Staples out , saw the surgeon he says I'm healing really well , I go back in 2 months . Until then its physical therapy galore !!

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 10/3/2010 11:38 AM (GMT -6)   
I have to agree that Doctor really don't know, and sometimes they just don't care as they
want to move from one patient to the next to get a profit...my first pain management
doctor was like that...Until I got a call at home from him saying that something showed
up on my contrast ct, he really sounded shocked to find something...
Anyways welcome to our group, sure wish it was under better circumstances than chronic pain.
Others will be by with better advise, but please don't give up on all doctor, some truly do care.
well wishes for a low pain day...
(((((((((((((((((((((((((((PortMac))))))))))))))))))))))))))))))))))))))
healing Hugz
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

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