Hopeful, thank you for the tips and prayers. I want you to know I have been reading your post about getting off cymbalta and while I can not imagine that kind of pain, I understand daily pain. You and everyone who lives with constant pain were in my prayers last night and always. Before PN I would tell people who had pain or terminal diseases I would pray for them. I never understood. Words. Just words. Until you live with debilitating pain (and mine has only begun to this extent but knowing its forever....) until you experience it you can't possibly empathize with someone. Now, when I say I am praying for someone with pain, I can almost feel the pain while I pray.

Yesterday when I got to the doctor they called the referral in and that was that. Nothing else was needed. My appointment with the neurologist is April 23.

I guess yesterday was my blessed good day to give me hope, as the darkness descended so did all the old pain and water bucket and today is not real good either.

I honestly do not know how people survive life long pain with no hope of it ever ending. This is definately a new phase in my life and clearly I need to figure out how to accept it.

I pray you are having a blessed good day today.

Hi Stacy,
I really DO understand the pain of which you speak. I don't know if it helps but I think when the pain was new to me, as it is to you now, I had more days dwelling on what the future may be. As time progressed I tried to learn to live one day at a time.

I'm in no way proclaiming to do this all the time. As a matter of fact, I just told my husband yesterday that I was afraid something was wrong with me that might take my life and they haven't been able to find it.

Sounds like i was really positive yesterday doesn't it

But on my goods days I remind myself that even though I have this pain I have a lot of other blessings. Today I'm back to taking it one day at a time. Every morning as soon as I get up I thank God the day. Every night before I go to sleep I remind myself of everything I'm grateful for. It works more often then not.

When I become too focused on what the future my bringing I remind myself that I believe in miracles! You never know many one day......

Wishing you a blessed and low pain day.

Hopeful, you are exactly right.

That is exactly what I have been doing, thinking of a future of this not really the pain in this moment. All I can seem to think of is many, many, more years stuck on my butt missing life.

You are absolutely correct, being thankful and learning to appreciate each day is exactly what I need to do. I guess this past week has been my "pity me" time and now its time to figure out how to live with this disease.

I did manage to get my appointment moved up to April 16 so that is good, I guess. Not sure what to take, expect or request. After 2 years reading here, I now feel so overwhelmed that nothing is staying inside my head, it has all flown out.

Thanks Hopeful, for very encouraging words! You ARE blessed, for sure, even through your pain.

Hello Stacy. Sorry you are in pain like that. If you don't like your current doctor, do yourself a favor and start looking for a new one who can understand you, and whats more understands the condition you have. Without the medical field to help you, it is most difficult when pain dominates everything... A good PCP will give you the referrals you need. If you post where you live, someone on line here may be able to direct you to some doctor they know.\
Please don't give up, and keep the faith. I will be here to listen anytime. You do need a good physician. Also a physiatrist, (Not head doctor) may be another approach. Many do not know what kind of doctor this is. A physiatrist treats the whole person, not just a set of painful symptoms. Mine happens to specialize in pain. You do need referral for most neurologists, but I am not sure about the physiatrist. Take that first set and set up an appt. with a new doctor. Bring your written list of symptoms of pain etc. It also helps to have someone with you when you go. Doctors tend to listen a bit better when back up is in the room with you. Go forward, don't stop, there is relief and help out there, but you must find it. It took me several years to find the crew of physicians I now have. It was worth all the searching to have them. I will keep you in my thoughts and prayers. Keep that faith going OK? Write if you feel like it. ginnie

[QUOTE=Stacy2012;1062048]Hopeful, you are exactly right.

That is exactly what I have been doing, thinking of a future of this not really the pain in this moment. All I can seem to think of is many, many, more years stuck on my butt missing life.

You are absolutely correct, being thankful and learning to appreciate each day is exactly what I need to do. I guess this past week has been my "pity me" time and now its time to figure out how to live with this disease.

I did manage to get my appointment moved up to April 16 so that is good, I guess. Not sure what to take, expect or request. After 2 years reading here, I now feel so overwhelmed that nothing is staying inside my head, it has all flown out.





Hang in there, and things will get better!

David in Georgia

Glad to hear you are going for an appointment with a neurologist. I pray he will know what he is doing, and offer you some real help. When you have a doctor in your corner, this gets rid of much of the stress. If you can, keep a journal of all your symptoms. Bring someone with you to the appointment, as doctors tend to be more in tune with you when you do that. I will be praying for you too Stacy. ginnie

I tried to provide a detailed answer to this in your other thread: http://neurotalk.psychcentral.com/thread202914.html

Please, even if you feel you're losing faith, God is always there for you and He believes in you. He can get you thru the pain.
Bless you!

Putting the pieces of the puzzle together...

Last week I had a good day then crashed again, now today another great day like that one. What is in common? I took my BP pill, the diuretic. I have been weening myself off this pill, down to 2x a week for a couple months now. I guess when I took it today and last week it takes the fluid off my foot and swelling goes down, less pain, less flare.

I am taking that dang pill again tomorrow. It is 7pm and I am usually in pain right now, but nope. Granted, if I stay on my feet too long they start to flare but less than before and I can remain up longer. I even ironed a pair of hubbys pants today.

I doubt this pill is my cure by any means but it sure is my miracle to lesson flares and keep my feet out of the water. Thank you Lord.

Ohhh Stacey that's great! So glad to hear you are having a good day. Here's hoping it is indeed the BP pills so you can take control of it.

Isn't it funny how we usually have to figure these things out for ourselves.