So many forums, where do I start? Here I think

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New Member

Date Joined Jan 2010
Total Posts : 1
   Posted 1/29/2010 12:12 AM (GMT -6)   
Good evening everyone,
Several forums apply to me, but pain is my biggest "control" issue - or lack of control, so I thought I'd just stop in for a minute. It is very late, and I'm tired. I've been reading your posts, and so glad to find ya'll here. One is the loneliest number... no one understands pain, except others who experience it.

My husband lives it with me. My crying, frustration, distress and despair. He deserves some kind of award... bless him. And on Monday, Feb. 1, HE has to undergo heart bypass surgery, 4 or 5 bypasses, including stents that were put in five years ago.

I am a stroke survivor of a right hemisphere, intracerebral bleed on 12/29/04 at age 49; have bone spurs and deteriorating spine at L5, L4, and also in the C-discs but not looking at the report right now. I have an anxiety disorder, and have taken alprazolam .5 mg for that, about 15 years - only 1-2 times a day unless there's a lot of extra stress.

I'm very conservative about taking pain meds. I have GERD, and take Nexium, 40 mg. I take Exforge for blood pressure, but I lost about 50 pounds last year (see next paragraph), so my blood pressure is really good, and sometimes I don't need that.

I'm diabetic, but only diagnosed after the stroke. Being in a wheelchair, left-side hemiplegic, might do that to a person. I take metformin, 500mg, two tablets with dinner, and my blood sugar is very controlled. I have to be careful, because I forget to eat. Stroke girl thing.

I had diverticulitis that caused me to have a permanent colostomy last July, 2009. Since then, I have had severe peripheral and sciatic nerve pain in my left leg, left buttock, back, and even in my head. In November, I was in the hospital and tests found an ovarian cyst - but "they" didn't do anything about it.

I also have fibromyalgia, but I think my doctors forget all my problems... "they" seem to think I need "therapy."

I had an allergic reaction to the Fentynyl patch in the hospital. In September, during one hospital stay for horrible nerve pain, my neurologist put me on Cymbalta, and I tried it for 3 months, but became suicidal. No thanks - and it didn't help my pain.

In November, doctors put me on Lyrica, 50 mg, twice daily, started to make me dizzy. When I threw up one night two weeks ago, I quit taking that. It wasn't helping my pain either.

My doctors keep prescribing hydrocodone/APAP - which I have lots of... but it doesn't help my pain, so I refuse to take all that. The ONLY relief I felt was a little morphine sulphate sent home with me from the hospital on December 8, but do you think ANY of my doctors will prescribe it for me? No, they write more norco or vicodin instead... what????

I couldn't get into a pain doctor before my husband has his surgery next week. He won't be able to drive now for a long time, and I'm paralyzed in a wheelchair since the stroke... not easy to get to any doctor. Plus, he is on family leave, about to have to go on COBRA, and I will have to switch to Medicare for the first time. I am terrified. My home health nurse suggests that I get traditional medicare and the prescription drug coverage - NOT a managed care plan. Such a shame that my deductibles and this plan year's maximums are already met with Cigna... but life is life.

Or is it life is a pain... thank you for letting me vent.

I have ONE morphine pill left. Been saving it for that unbearable moment. I've had a terrible cough for three days. I really need some sleep. Maybe I should take it tonight.

Blessings to all of you.

Veteran Member

Date Joined Jun 2009
Total Posts : 974
   Posted 1/29/2010 3:21 AM (GMT -6)   
Does your community have something like senior services or other type of group that could provide transportation to doctors appts. I worked as a home health aide before becoming disabled and alot of my clients, some in wheel chairs, used this service. Their vehicles are wheel chair compliant.

It does sound like you need a good Pain Management doctor, make sure they prescribe meds along with doing different procedures. If you are eligible for a home health nurse you may be eligible for other services. Talk to your home health nurse to see if a case worker could come to your home.

Good Luck and welcome to the HW forum. Hope your husbands surgery goes well. Keep us updated when you can.
DDD, osteoarthritis, fusion surgeries C-5/7 & L-4/5 both in 2006, torn meniscus left knee 2000 & 2002, buldging disc L-2/3

Forum Moderator

Date Joined Feb 2003
Total Posts : 16765
   Posted 1/29/2010 6:33 AM (GMT -6)   
Hi Wheelchair,
Welcome to Healing Well. I am so glad that you found us, but very sorry to read about your plight. I do hope that you will stay around and get to know us here at the forum. If you have been reading any of the posts, I think you will find this is the very best group of people that you would ever want to stumble across. I found this place by accident years ago and I am still here, lol. One thing you will learn quickly here is that you are not alone, there is a lot of us in the same boat as you, dealing with CP. CP tends to make us feel that way too. Yes, you are so right only another person with CP can truly understand and appreciate what our lives are like dealing with CP. Just remember, don't give up.
You are in the same mess that many of us have gone thru and thats finding proper medical care for under-treated pain and being an under-treated pain patient. I honestly do not know which is the worst of the two because both of them are terrible. Yes, you are in dire need of a referral to PM specialist, until you get to one you will be stuck where you are at now. Most PM drs will not see a patient unless there is a referral from another dr. So, get your PCP to ref you to one ASAP. Be sure you are ref to one that does write sdripts for pain meds in additional to doing different types of procedures. Some PM drs will not write a script and only do procedures so make sure you get one that does both.
I do know on Medicare with an HMO you are pretty limited in many ways. Finding specialists and drs  that take that type of insurance can be a problem too. Its very much controlled medicine with an HMO. I have regular Medicare and so far no problems with drs. I have a secondary ins but it pays very little and sometimes no payments leaving me to pay the balances. But, I have a script card and my medication costs are off the scale. For instance I have psoriasis and just stareted a medication for it, 30 pills over $900 so yes, I need this script card. My copays vary from $10 for a generic & $35 for non generic. Supplemental ins is a must for someone on Medicare that has health issues, that is if you can find something you can afford.
I do hope your husband's surgery goes well. Please let us know when you get a chance on how he fared.
Unless you live in a very small town, most have transportation services available for disabled and wheelchair bound folks. You could ask your nurse that comes to see you. You might just get online and go into local for your area and type in transportation for handicap or disabled people. We have buses that run here in my town, takes the people to the store for grocery shopping or trips to the drs and hospital. M mom lived in a small town and used their services, she said it was great not worrying about how to take care of business.
Keep us posted on how you are coming along,

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.

Veteran Member

Date Joined Dec 2007
Total Posts : 1235
   Posted 1/29/2010 9:01 AM (GMT -6)   
Hello and welcome,
I'm sorry that you have a need to be here, but am glad that you found us. You certainly have a list of medical problems that need addressing and for right now, it seems that getting into a proper pain management program should be at the top of that list. Lyrica is a great medication for treating nerve pain, but you were at an extremely low dose, which is perfectly normal when first starting Lyrica. The normal dosing range for that medication in treating nerve pain is usually 150 mg twice a day or for some 100 mg three times a day. It does have some side effects as all medications do, but usually after about a week, those side effects lessen or disappear all together.
I am sorry to read about your husband's upcoming surgery and hope that it will all go smoothly and his recovery will be uncomplicated and quick.
As far as transportation goes, check with your local recreation department. They usually can refer you to town/city or county programs that offer transportation to the elderly and disabled.
Anyway, I just wanted to welcome you to the forum and wish you good luck in finding a good pain management program. There are a lot of good ones out there.
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.
Avascular necrosis of left wrist- maybe hips too

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