RSF...

You appeared to have covered very well many of the issues dealing with 24/7 chronic pain and often the depression that goes with it. I realize how difficult this can be for my husband. Both of us can no longer do the things we once enjoyed together. I often try to say a little "funny" or something to make him smile, which seems at least for the moment, seems to put me in a better place.

While "taking it one day at a time" may seem to be often said....it is true. Just to get through each day is an accomplishment. I try very hard not to look too far ahead because it will often bring me down.

Wishes for better days ahead.


Gerry

There is so much more than just the pain from the RSD/CRPS. I have so many things going on right now that I think I am just overwhelmed which just causes the depression and anxiety to get worse.

My PM and I were not sure what meds were doing any good so we started cutting back on all of my med. We cut out the gabapentin last month, which was such a low dose for RSD/CRPS that it was not helping. We cut back on the amitriptyline. He wanted to keep me on that until the psychologist gave a better recommendation. We started to cut out the MS Contin, but he asked me to stay on a minimum dose for now since cutting it out completely was causing such bad withdrawal and increase in pain. I do like the idea that he is trying to see what is helping and what is not. My previous PM just threw more pills at me each time I went in that I had no idea if anything was working.

With my husband's income being so limited, and me not being able to return to work, our savings are completely gone. I do have my SSDI hearing in a little over a month, but I am worrying about that. I understand that my ALJ is very hard on the cases that he hears and denies more claims than he approves, so I am nervous about that. Although, I am so limited on what I am able to do, I do not see how he can deny my claim.

My husband and I have been fighting a lot lately. When he got rid of our bed back in December and brought in two twin beds, both in separate rooms, that really broke my heart. We are in the same room again, but still sleeping in separate beds. He has been back to drinking and using marijuana again, and I have no idea how to handle that. We have a hard enough time buying groceries and he wants to waste our money on that. The couple of times that I have tried to bring it up, he gets very defensive. When he gets defensive or drunk, he gets verbally abusive. At least that is all it is, but I sometimes worry about that too.

My mom is upset at both my sister and I. Treating us both like we are failures because we are both struggling with our disabilities. My sister had a craniotomy in the fall to remove two non-malignant tumors but is having a very difficult time recovering. My niece is her caregiver most days, but my niece struggles with being bi-polar, which makes that a difficult situation. I worry about both of them.

I do not sleep hardly anymore. Pain keeps me up most nights. I seem to have developed a fear of the shower, more a fear of falling, and because it hurts too much. We do not have a tub, so most of my washing is out of the sink when I can with at least one shower a week no matter how much it hurts.

I am overwhelmed and having a difficult time getting used to a different way of living. I have always been active. Now, my enjoyment is watching the many many squirrels out our back window, and trips to one doctor or another. I have had to deal with depression a lot in my life, I have even tried to take my life years ago. I has been in my thoughts again, I have even thought of a plan or two, but I do not think it is something I could act on again. I thought it would be a good idea to program a few hotlines in my phone just in case I really needed someone to talk to. I have more going on that I do not feel like sharing, I probably never will, but it is all stuff that is behind me, stuff that I no longer should let burden me, but I still do.

I know I am not alone. I am never alone here on NT. I am surrounded by wonderful people, some of whom I call friends. I try my hardest to not let my friends down, but to support them and stand beside them when they need someone, just as you all have done for me. - Thank you!

Dear Alaina, I'm terribly sorry that your family are not more supportive. That must amplify your pain and sadness all the more and makes it especially difficult when you have so much going on in your life.

Thinking of you.

Alaina,
You have so many issues going on in addition to medication withdrawal; which that alone will cause awful side effects; depression being only one part of the process. This one can cause suicidal thoughts. Combined with you and your husband's issues, as well as lack of family support; results in even deeper depression.

Are you taking anything for the pain??? While you may think nothing is helping; just might be a combination of too many at one time. I long ago had to get off the Lyrica and Cymbalta. They did nothing for my pain.

I tried a while back to tirate down a bit on my Oxycontin; the side effects were awful (my PM warned me). While the Oxycontin helps reduce my pain considerably; I just wanted to lessen the dose because of the constipation. I'm back to my original dose

Please continue sharing; you need an outlet. Hopefully NT support will be helpful.


Gerry

Gerry,

I spoke with my PM the other day and he recommended that I continue on with a minimum dose of MS Contin for now of 15 mg 3x daily, much lower than the 30 mg 4x daily I was originally prescribed. It apparently was helping some, I just did not think it was, but the dose I was on was not helping any better than the dose I am on now.

I was on 600 mg of gabapentin 3x daily but that did not help at all. It now has been removed from my prescription list. I am taking 50 mg Amitriptyline, which is being used for both nerve pain and as an AD. I am not sure if that helps or not, but when I cut that back from the 100 mg I was taking, I did not notice any difference. We talked about changing that out and starting a different AD, but mainly to treat the depression. I am also taking Terazosin 1 mg 3x daily. It does not help for nerve pain, but my PM is hoping that it might help some with the blood flow issues to my right leg. That was prescribed at the beginning of February and had to be titrated up to the 3x daily I am at now.

hi alaina. i hope your day is going better today. if i were you i would see if you can find a pm dr who understands rsd and can give you the right dosage of meds to help manage your pain. I'm not dr but it sounds like you may just now be getting that from the dr you are currently seeing.
as for your family issues, maybe seeing a counseler might be helpful in learning how to cope with your family. in my opinion you need to take care of yourself first because you are dealing with a very painful chronic illness along with depression and that is a lot to handle in itself. it is not your fault that you have rsd. and it is very real and very painful as we all know too well. don't let others bring you down. you have enough on your plate. i think that a good dr can help you learn what to do in order to take care of yourself and not be brought down by others.
my thoughts and prayers go out to you. i hope it helps you to know that you are not alone here at NT and that you can PM me anytime. try to get some rest and take care of you.

Alaina, I know well how difficult and elusive sleep is. My psych some years ago prescribed Valdoxan, it is melatonin based and non addictive. It has been on the whole very successful and I sleep more now than ever before. My pattern is still disrupted and I get up a number of times throughout the night, but, I find with the Valdoxan, I can take it at about 6pm, be in bed by 8 and asleep by 9, then I'm up at 11, 1, 3 and the alarm goes off at 4. Once the alarm has gone off for DB to get up and get ready for work I can't go back to sleep. More often than not these days I get up and feed all the animals so he can have an extra 10 minutes. I then potter around from 4 until 7 and then get ready for work myself. On the days I'm not working I will lie in bed reading until 5ish and then go watch what I've recorded on the Tele. My active days are long long gone. It is a struggle some days to even shower. Going to work is really the only thing that gets me out, or unless I have to go do something for family members.

My family have dropped off the face of the earth, to begin with they were demanding my assistance with everything. Now the penny has dropped I am unable to help as I used to, I rarely hear from them. Never a call just to see how I am, and the rare calls now always start with "hi, are you home, hum can you do this - never hi how are you! I learned to say no, I went through a phase where I just didn't answer the phone or the door. I'm getting better with doing those things now because it's not them demanding my help!!

I'm sorry your mum is not supportive, mine also doesn't understand, she even moved further away from me, despite knowing how hard it was for me to visit her daily with all I had going on and she only 3 minutes away, she moved 25 minutes away and grumbles I no longer visit. This despite knowing how I still struggle to drive in the car. She thinks my PTSD is all in my head and I should just get over it. If I can drive to work I can drive to visit her.... I only work 3 days a week, often from home, and the drive to work is done under duress.

I would be upset if my DB procured single beds for separate rooms. I can understand separate beds in the same room given my painful thrashing round at night does disrupt him, but, I would expect him to talk to me about it first. Sending you lots of hugs Alaina, hang in there

I finally had to give in to Ambien Cr; otherwise with the pain (including spine issues after fusion, along with worsening spinal stenosis, PN, etc.) sleep was next to impossible. I can count on getting 5 hrs. sleep; except for "potty" visits due to my rectal cancer surgery 3 years ago. Because of the Ambien, I am able to quickly get back to sleep. It has been a blessing.

Shortly after my spinal surgery, I got a Sleep Number Bed that also elevates making getting out of bed much easier for me. After getting this bed, my husband has been sleeping in a different bedroom. But; this is by mutual agreement. With all my issues and having a bed that elevates when I get in and out; made sleeping very difficult for him. ( I can certainly understand Alaina feeling badly about her husband deciding something like this without consulting her.)

Pam, you are amazing considering all you have going, you continue to work, drive, etc. I am sure it wasn't easy to begin saying "no".....But it sure would be nice if family members were more supportive instead of making additional demands from you.

It really is comforting to have the support with one another here on NT.


Gerry

Oh dear Gerry

It has been quite some time now since I had 5hours of sound sleep
This was rectified by the folate introduced into my system
It with my B's multivitamin potassium a clean diet
NO GMO
OR ANY ENRICHED FLOUR
AND NO SUGAR ESPECIALLY REFINED IN ANYWAY
I HAVE BEGUN TO DO THE SAME FOR MY DAUGHTER AND GRANDDAUGHTER
I have given my children the the new found information of mutation
My daughter Christine has tested positive
I pray that this chemical change that happened to me
And it felt GOOD
it still does
My pain is still very much alive
I have a stronger mind set
I am not visited by doom
I call the "devil at his best"
To keep me down in depression
Oh God
Some of the thoughts that would enter my mind
To not pick up a drink through it all
I Hate taking pills
I have been withdrawing from Xanax
Today is three weeks
It is kicking my
A.S.S.
Hard
But I am able to handle it as my body and mind become adjusted
It is so interesting to me how much of a change this has been for me
I am doubly amazed it helped with sleep
I can go to the bathroom at 4 or 5 in the morning
and have to get up
Upon returning I CAN go back to sleep
Whatever it takes to get sleep
It is vital to have
Thanks you for being a friend
There are some awesome people here
And some have gone
And I miss them
Love
Me

There are a lot who have gone of late. I hope and pray life has been kind to them and they have found the elusive "get up and go" feeling which drives you to enjoy life. I'm sure there a life out there to live and I pray that is what they are doing.