Having a hard time
 

I usually try to give my support on various parts of this forum, and most of that is on the RSD/CRPS subforum. I am often over there because I was diagnosed myself last July. I originally took it fairly well figuring that treatment will probably help relieve some of my pain, when in fact it has gone the other way. I have not found any relief from any treatment so far. I have lost two doctors so far because I was beyond their ability to help. My current PM is taking me off all of my meds since they do not help.

I try to make my life sound fairly good. I am married to a husband who I love, but I have even been questioning that lately as he has not been treating me all that well these past few months. Even telling me just last week that my CRPS is entirely psychosomatic. Blaming me for almost anything that possibly goes wrong. Yelling at me today for being depressed... I know that spending all day, every day around someone can drive two people a little crazy at times, especially when there is a chronic pain syndrome on top of it, but I have no way or no where to escape, even for a short while and he hardly ever goes anywhere.

I feel like I am loosing my mind. I can hardly do anything, I am often finding myself having panic attacks and difficulty breathing. I am so unsure of anything anymore.

I do have an appointment with my psychologist for a 2nd appointment on Wednesday but I feel like that is ages away. I talked with my mom for a little while yesterday, I had a good cry which felt good, tried watching a few cute short films to cheer me up, but it was all short lived.

I just feel hopeless and do not know what to do.

The good thing about the NT forum is so many of us can relate to each other's stories. We can empathise and we can learn from each other. It sounds like you have offered lots of help to others in the past and I hope many of us can drop by this thread now and offer you some support.

Our loved ones do reach saturation point, they don't realise it but they do. They have as many ups and downs as we do, sometimes more, they live in hope the next procedure will work and the person they once knew will be miraculously restored, when it doesn't work like that, they hit a hard place. For us, we don't hit that hard place because we are just too damn busy trying to cope with all the changes coming our way.

We didn't choose this life, it chose us. Ask your DB to put a small pebble in the heel of his shoe, tell him to walk around with it all day long for a week or more, when he goes out and when he is at home. When he asks you why; tell him it is a personal choice he can make, he can choose to experience the suffering you go through or he can choose to see how silly his accusation is. As if we would choose this life!

Do you have an IPad or laptop? I found on YouTube a fabulous relaxation resource in the name of David Fairweather. Type his name in and try listening to one of his sessions. When I was really bad in early December I went to sleep to his voice every night and on a few occasions used his short 15 minute relaxation as well. You have nothing to lose, give it a go if you can :hug:

Dear Alaina,

I am so sorry to hear you are suffering the other impacts that go along with chronic pain. The relationship issues that develop with family and friends, that no matter how hard they try to be understanding, just do not relate since they do not experience what you do.

I liked Pamela June's "put a pebble in his shoe" message.

You are going through a lot right now in addition to your chronic pain issues. Losing some docs, changing meds, are contributing to your hopeless feelings right now.

I don't know your husband so I can't speak for him or his state of mind but looking at it from what "may" be his perspective, it sounds like he may be as frustrated as you are with finding help for your condition. He must feel somewhat helpless that HE can't make things better for you and that frustration comes out in all the wrong ways. Just like the sufferer of chronic pain, the spouses, also want their loved one back to the way they were.

These conditions take a lot of "adjusting" not only for the person afflicted but for their families as well. Everyone that we have in our lives becomes affected by our conditions to some degree. They need to adjust as well. Some work harder on that than others and sometimes we will lose some friends along the journey.

I feel sure that my family thoughts when I first become "disabled", were that I was just being lazy, depressed, a whinny baby, etc. It took a LONG time before they realized the reality of the situation. That I was NOT being lazy, that I was incapable of doing things.

When accused of being "depressed" by a family member, as if THAT was my problem and nothing else,..... I asked them, "If your life was as limited as mine, wouldn't that depress YOU?" Their opinion slowly changed to realize that there was an answer to which came first the chicken or the egg. In this scenario, it is not chickens and eggs, it is illness and depression. In MY case, the illnesses have caused my bouts with depression which thankfully are few and far between and very short lived. My family member had believed that depression was causing my lack of ability.

It took a litany of items that have disappeared from my life before, stating them one by one, and asking my family member how that would make THEM feel before they finally got the message.

I am not sure if it was the fact that I had spelled it out in plain English or if the fact that my family member began to have their own chronic pain issues, but the point was finally received.

It really is difficult for those that have NOT experienced it to understand and accept what is happening in our lives.

You have been a tremendous support for others here on NT and I hope that we can be the same for you as you go through these difficult times. I feel confident that once you have all the proper tools in place, things will improve for you. The proper tools being the right physicians and medications.

I hope your husband will become more empathetic and understanding. It is difficult for them to make the adjustments to YOUR new life as it is happening to you and hard for them to accept that.

Please keep us posted and remember that everyone is entitled to a little pity party every now and then. Have a good cry when needed, then pick yourself back up and fight the fight. We are here for you as you have been for us.

Thank you both. I will look into those David Fairweather videos that you talked about. Maybe they can help a little with some of the anxiety.

I have heard of the pebble idea before and is a great idea for someone who does not have to live with pain every day. My husband does have an understanding of what living with pain is like, at least to some degree. He has to deal with violent foot cramps at least a couple of times a month, and has always had an issue with earaches due to a birth defect. I know it is not quite the same, but it is still pain that he has had to live with most of his life. The one big difference is that his pain often does go away. Trying to get him to understand the difference has been a real challenge. One that I have not been too successful at.

I do have a few of my in-laws coming by today. Maybe seeing my nieces and nephew will help break me out of my depression, even if it is for a short while.

I was just reprimanded this morning wallowing in my pain, and letting this depression get to me. Although it is times like just now, when he came in as I was typing this, to try to cheer me up. To remind me how much he loves me, that I feel like I just might be able to push through this.

Alaina,

It seems like we might have a similar situation. My husband is retired and home most of the time. We are together almost 24/7. He must have pain at times; but he never complains.

While I want to not complain too much; at times I hear myself. My problem; he doesn't say anything.....I mean nothing; not a word about my complaining. He just goes about whatever....reading the paper; looking on the internet, etc. When I really think about it; because of my condition, both our lives have greatly change.....We don't go out very often, no vacations, etc.

Then I start feeling a bit sorry for him and try to cheer him up or say something to get him to smile. At times, I even get a"hug". I miss the old me as much as he probably does too.

The same appears to be true for you and your husband. In spite of the downers; the love is still there. When we get down they appear to as well. Just in a different way.


Please know as you are here for everyone; we are here for you.

Gerry

Dear Alaina
 

Thank you for that Debi.

I have noticed a number of people having a difficult time lately, so I guess I should not complain too much. it does feel good to be able to reach out at the times when it is very much needed, and I really needed to do so the other day.

I am doing a little better today. I think having some family over, even though it was only for a little while helped. Of course having a 2 year old and a 5 year old running around, wanting to jump in my lap had my nerves on edge. It is always nice to see them though.

I am still fighting with this, but am in a little better place. I just hope I can stay there and keep working forward instead of back.

I made it to my appointment with my psychologist today. It felt good to be able to vent to someone face to face. She now understands a little why I am so stressed, and depressed. There is an awful lot going on around here at home.

I still don't know if she has any idea as to the amount of pain that can go along with CRPS, as she thinks that some of my stress is sleep related and that my sleep problems are behavior related, not pain related.

She does want to help with some relaxation and breathing techniques with me to try to relieve tension and stress. I have always had my own methods, but I am willing to give her suggestions a try. If they don't work, they don't work.

Although psychologists can not prescribe in Michigan, she is sending my PCP and my PM a recommendation to take me off the Amitriptyline and try something else. Her recommendations were either Zoloft or Effexor. I know the Amitriptyline was a dual purpose med, but I am having doubts on its effectiveness for either purpose with me. I have an appointment to see both my PCP and PM at the end of the month. Since I see my PM first, I will ask him. If he does not feel comfortable dealing with either of those meds, I will talk to my PCP the following day. She thought it would be better to have my PM handle this since I see him at least once a month, and usually only see my PCP every 3 months.

I was doing rather well this morning, and during my appointment, but as soon as I got back home, the depression started settling back in. If all I get out of this is someone that I can vent to face to face, and hear there suggestions, at least it is something.

Alaina, these are just my thoughts as somebody who is in remission from Major Depressive Disorder.

Meds can help but matching the "right" med to the "right" person is often a matter of trial and error - it can take some time.

I really like the ideas from your psychologist about relaxation and breathing exercises - they (which my psychologist taught me) have helped me a lot.

Other options (I don't know if your psychologist uses them with her clients) are Cognitive Behavioural Therapy and Acceptance and Commitment Therapy - my psychologist has used both of these with me which I have found helpful.

With care :hug:.

It's good to talk! If your psych is the person you manage to let everything out to then go for it. Did you have any luck with David Fairweather? Click on the link "watch" below and it should take you to YouTube, click on the link below that with numbers at the end and it takes you to him. That is if we are allowed to post it directly, our moderators will remove if I've broken a rule.

Self Hypnosis Anxiety Reduction - YouTube
https://www.youtube.com › watch

https://www.youtube.com/watch?v=cCJJwkbn-eY

Self Hypnosis: Learning to Relax - YouTube
https://www.youtube.com › watch

https://www.youtube.com/watch?v=uvJ6vrdml7w

I second that
 

As she says trial and error will take time
Did she tell you that by the time it is seen the
antidepressants is not working then the weaning process
IS something you SHOULD know about
WITHDRAWAL
And for some people could cause a domino effect
of trial and error gone bad
When lyrica came out fairly new
Was not listed in a category yet
I would tell doctor Krish
I have a feeling of high
I put on it for neurological problems
And had severe allergic reactions to
where as my eldest is put on it for her epilepsy
I do not tell you this to discourage in any way
As I know how it feels
Do log everything as you start them
I pray
So pray
YOUR depression is lifted
I had a friend over yesterday and we had
Morning drinks on the veranda
I was in such good spirits and I
could feel the goodness
That gut feel of doom coming to visit
And all my will could NOT get it to go
Your depression whatever kind
Robs US FROM A QUALITY OF LIFE
I this person did not want surgery
I HAD NO CHOICE ACCORDING TO DOCTORS
I even wonder about that

Isn't that sad

Yet I do not FEEL sad

My a smile on you face come from you gut
May it be the kind of smile that lingers on and on
for the thought that made you smile
NOBODY can take that from you
I feel you pain and sadness
Be well friend
Love
Me

Dearest Alaina
 

Oh my gosh.....Please know that in no way was I trying to lessen your issue. That was never my intention. I was just trying to be funny.

I'm glad you got to talk to someone. I've been able to do that in the past and it always helped to talk to a person that was not directly involved in my life.

And please.....complain away....that's what we are here for my friend.

Debi

Thank you everybody for your thoughts and encouragement. I am having another rather tough day, It took me 4 hours of just lying in bed trying to find a reason to get up. I never did find that reason but I got up anyway.

Reading all of your responses set me off crying, in a good way by the way.

Kiwi - I will ask about the Cognitive Behavioural Therapy and Acceptance and Commitment Therapy when I see her again in a little over a week.

Pam - I did start to watch a few of David Fairweather's videos. I started with his self hypnosis, anxiety reduction video but I was having so many distractions and interruptions that I had to stop. I do plan on going back to them when I have fewer distractions. I do appreciate your recommendations. I am pretty sure that you can post links to most youtube videos by the way.

Eva - I unfortunately know all about withdrawal. Not from an addiction but from trying over the last month and a half, to get off of MS Contin my previous PM put me on, which apparently is helping more than I thought. I almost ended up in the ER yesterday. I am not entirely sure if the intense amount of pain was sending me into what I can best describe as shock, if it was withdrawal, or a combination of the two. I can deal with the headache, profuse sweating, diarrhea, cramping, muscle aches and pain...but not the burning pain I went through yesterday morning that left me crying and beginning to convulse. I also understand that the withdrawal is part of my depression, but I also know that it goes beyond that. I have struggled with depression since my younger days and have always been somewhat good at hiding it. I just finally decided to try to get some help for it as it has been getting much worse over these past few months.

Debi - I did not think for one moment that you were lessening my issue. I just know that there are so many others on NT that are dealing with so many issues and complications in their life that my own problems seem so small in comparison. And yet I still can not seem to get past them.

Please Alaina; try not to compare your problems seeming small to others. Each of us deal with things differently, so what may appear to you as a bigger problem than yours, may be not be the case for that person.

Thank you for letting us in by sharing your feelings. We care.


Gerry

I remember the pain and trauma I went through coming of MSContin and OxyContin. Now I hear you are doing that it puts things into perspective, I know my withdrawal was inexplicable, I couldn't fathom the feelings I was going through were withdrawal symptoms. I mean ok, I expected to experience something, what I got was not what I expected. I came off of my own volition and like you I felt pain, sorrow, irritation, despair and life was not worth living. It does get better I promise you.

I know you read my threads and are probably thinking well you don't sound better, but what I'm going through now is pure depression, not withdrawal. My PM put me on Temgesic and within days I felt better. I take it for my pain, I take way less than prescribed and I know now, it helped me through the withdrawal from Oxy and MS. Never again will I take that medication. My depression stems from living and coping with an alcoholic in recovery, not enough pain management and trying to hold it together so no one else knows I'm suffering. I have told no one except my NTrs. NT is my go to place. I can't get to see my psych at present, costs with DB treatment are sky high and that puts additional pressure on me to keep at it and at work. My psych and PM will both tell me not to work....

Hang in there Alaina, it will get better, I'm here for you and sending positive thoughts and virtual hugs.

Pam,

Yes, I have read through some of your threads and do understand that you are suffering from depression. I would like to mention, I have been dealing with some mild depression all of my life. I know that the withdrawal symptoms are not helping the matter at all, but I slipped into the sadness, loneliness and helplessness that I am feeling now a few months back, which was well before I started reducing any of my medications. When I went in for a psychological evaluation for a spinal cord stimulator, I decided I was not going to lie on any of the questions to avoid going for counseling. I was going to take that opportunity to call out for some much needed help. Help I should have looked for a some time ago. I went to one psychiatrist last August when it started to consume me, but I did not like how he wanted to handle matters. I never went back, but should have started searching for someone else back then.

My husband keeps bringing up that I failed the evaluation. No, I did not fail. Please stop telling me that. I am just seeking out the help that I very much need.

Alaina, I feel for you, I re-read my message and it looks like I'm saying its just withdrawal, not what I meant to imply. I wanted to say you have depression along with the withdrawal and with help it will get better.

That feeling of loneliness and helplessness is awful, I wish I could magic it away for you. Good on you for hanging in there and getting yourself into a position where you can get help. It is so important to gel with the psychologist or therapist. I had one once where the sessions were more traumatic than beneficial. At that point in time I didn't realise you could pick and choose who you saw. I was seeing her over my fear of being in the car after a head on MVA and all she wanted to do was talk about my childhood and my mother. I said those things have no bearing on my fear of being in the car following the accident and she went off on a tangent saying I was wasting her time, it was quite awful. Anyway, long story short I told my GP and he referred me to another psych. I wish she was still practicing.

Gosh you are right, you haven't failed anything. My understanding of the evaluation is they decide the SCS implant is either suitable or not. Nothing I'm aware of says it is a pass or fail. There are millions of people who are not suited to the SCS implant, or even the pain pump implant. The PM who referred me for my SCS implant told me I had to believe it was going to work. If I didn't believe it would work then it simply wouldn't work. At the time I said I believed it would. I am sure if I had said "no I'm not certain it will" I would have been told no you can't have it as it won't suit you.... :hug:

Pam/Alaina,

Responding to the psych about being uncertain would have most certainly disqualified anyone wanting to be approved for a trial. I guess I answered all the questions well enough to get the "okay" for the trial. I had always had my doubts if I wanted to deal with the wires and a battery slipped usually in the buttock area, etc.;

Alaina: as Pam indicated, it is how you may have answered questions which most of us had our doubts. I would not consider that a psych failure;.... just the fact you were not a good candidate for an SCS. Which may or may not have been a good thing.

I had a failed trial with the vibrations in the groin and knee areas. Not nice. My PM wanted me to do another trial.....I said "no"; I had only agreed to the trial in the first place because I felt pressured by my PM.

Pam; you are right tho; you really have to have believe it will work and want it enough to have a good positive attitude. I did not...

In my case I am glad I did not do the SCS. Since the trial, I have had three surgeries below the waist and groin areas that would have really messed up the wires/leads for the SCS.


Gerry

As I would have said
 

And would just like to add
Never to minimize in anyway ones depressive state
There are many contributing factors
As depression always in my life
On all different levels
For many different reasons
Your pain is deep I am sure
And when your pain cannot be addressed in
Anyway shape form
All has been exhausted
And in the end have to just live with certain
Problems till the day we die
Hoping you get a break
As that's all I pray for
I got lucky with some help
feeling better
And able to take what life has to offer
in a kinder way
I still hurts to type
Yet I have tried to push myself
I have so much to offer
Maybe not
I hope to
Love
Me

my dear alaina. i am so sorry you are having such a rough time with your rsd pain and depression from it as well. everything you wrote on this post is everything i feel from time to time too. i hope it somehow comforts you to know you are not alone. i am here if you ever need to talk along with the caring people here at NT. my family and NT have been a great support system for me. my husband has been great but sometimes living with a chronically ill person wears on them too and they just need a break. and sometimes friends you know may think that though your rsd is a physical illness that if you tried to be more positive it might help to lessen the pain. what many people who don't have rsd don't understand is that its hard to be always positive when your in constant horrific pain from a rare and incurable and quite terrifying illness. an illness that alot of drs don't know how to treat to help manage the pain. an illness where friends will sometimes say insensitive things like "you don't look sick". they don't see the pain we feel every day and the scars both physically and emotionally that we have due to rsd. but we know those scars are there and real and we understand each other because we are all going through it together. and even though our families, spouses and friends may not always understand what we are going through that doesn't mean they don't love us and care. they just get frustrated because they don't know what to do to help us feel better. i have been seeing a physchiatrist as well as a pain management dr on a regular basis to help manage my rsd pain, fibromyalgia (which i got several years after being diagnosed with rsd) and depression and anxiety. they prescribe meds that help me to deal better with my rsd, fibro and depression and anxiety. maybe that might help you to. just remember that rsd is not in your head, it is a very real illness that causes physical as well as emotional pain. and know that you matter to your loved ones and to me and your friends here at NT. i try to take it a day at a time. it's not as overwhelming to deal with that way. i hope you feel better soon. sending soft hugs your way.

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. :hug:

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.

Valdoxan
 

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 :hug::hug::hug::hug:

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.:hug:

Yes
 

To all even in to the very end
All that I wish for all
Is to FEEL good enough to
Fight a horrific fight
Some never getting the answers
they may have been looking for
Your experience strength and hope
and shared is something precious
And needed
You are HOPE
you
I
and others
Together we can remember
Love
Me

thank you for your beautiful words eva. they touched my heart. you are an amazing person. love and hugs. :hug:

i just wanted you all to know that i think you are all awesome people who i am grateful to call my friends. please don't ever forget how special you all are and that you all matter in this world and to me. love and hugs to all.

What a very sweet thing to say. Thank you!:hug:
the people on this site have made dealing with so many of my problems a little easier

i understand
 

I understand and am living many of the hard ships you have so bravely shared. My RSD started 13 years ago. Delt with ups and downs until early 2015, when a relatively minor injury threw me back into the burning fires of RSD. I have been unable to work since then and basically live in my bedroom. I am on MS 15mg, (was on 30), gabby (in process of reducing due to mouth sores), and flexeril as
needed. On anti depressives and take vitamin supplements. I take 100 mg amitriptyline (trying to reduce to 50) as no longer helps for sleep. Will be trying a new sleep aid which is an analog of melatonin. I see my PCP every 2 to 3 months, a pain specialist that is also my acupuncturist and A MD for injections
periodically even though short term relief. My family understand scientifically because I insisted they read helpful info. But I can't even fully grip the extent of changes. Unless you have felt 9-10 pain, 24/7, you just can't understand.

Enough about me. I am here for you and you are not alone.

Get in better/good with your mom, as you may need to plan your departure if
hubby crosses the line. Have a plan of departure as you should not have to be a part of anyone's verbal abuse.

i basically live in my bedroom too and pajamas are my favorite things to wear now! it's sad but true. but i try to make the best of it like we all do here. i get so much inspiration from all of you here at NT because even though you are all dealing with so much pain and depression from rsd and all the other problems life brings about, you still all find the time to try to make other people here at NT feel better with their struggles and i find you all to be very kind and brave people. we are true rsd warriors and i am proud to be part of this group. wishing you all a painfree as possible nights sleep tonight. and always remember to take good care of you. you deserve it.

Dear friend
 

Dear friend
This has been a lifetime of work
I have not such a nice true story as we live right now

My sister a medical assistant now a permenant F\T phlebotomist
She called me asking for some assistance on health insurance
There is someone now who is dying
All
Because
He
Cannot get health insurance
He has terminal lung cancer
This is the sad story that gets under my skin
He has been refused over and over again
My sister works for a pain specialist
Who is ready to retire soon
The richest country in the world
Killing us just by trying to force us consumers
not to have the information of GMO foods
Hopefully laws will change that
I am beside myself
As a young divorcer single mother at twenty four
My ex who worked for General Moters
Here in Linden NJ
UPON DIVORCE
He was ordered to pay $195.00 a week according to salary
He too was ordered to provide our three children children with health insurance
Well in the end
My ex at twenty six took flight
And worked for the next four years and
Transferred to another state in my own back yard
New York NY
Tarry-town to another plant
And because the child support department did not do a bloody thing to hold him accountable I upon my divorce "did not ask for alimony" as I felt I would be able to take care of myself finding a job that would offer a pay and Health Insurance
For many years "persons that were suppose to protect my children in the end failed me and my children
There is so much to this story
Bottom line
I had to apply for state health insurance
Because not only did he not pay child support
With a take home pay of $900.00 or more a week
Get the picture
He was a deadbeat
The same as my soon to be eighteen year old father
Another very pathetic story
At the end of the day in hindsight
I was a tough cookie
A tough cookie
Able to fight the system that is there to help
But treated like a pauper
And they were farthest from the truth
Deadbeats to the very end
My ex
Excommunicated himself from his children with me
What is the sad truth to this story
I had to fight all my life
Through the lies and manipulation
And how some very important persons who were suppose to oversee that my children's fathers would have at least provided health insurance
That was not the case
I have become strengthened
Empowering myself over the next thirty one years
Now
Today
Having worked hard to not only provide food shelter doctors
And this be my point
DOCTORS
my children did not suffer
If it wasn't state insurance i provided them with in the beginning and then private insurance as I worked those kinds of jobs
I always was the one to have to do it all
Still to the very end
Where the depressing state that I was already in became worse
loosing my last place of employment for the city I lived in for forty six years and lost everything my job a sense of accomplishment gone on April 22, 2015
It is still hard to swallow
But not having this doom over me has been lifted
Coming home from my pain specialist
Providing him with the information on the mutation
and how not just him passing the job over to my shrink
who in turn said I was asking him to do "tedious and how he felt it was a doubious thought"
I have written about this already
I sickens me
What I fight having to put up with
the stereotype state workers can be hurtful rather than be helpful
Most time I did their jobs
And this be my case all my life
And I'm still pushing forward
But there are many who fall short at the waist side
And tried to hurt my family or myself

There are many I have come to learn that either they did not know
Or the sick would have to go it alone
No advocate with them when need be
DOCTORS,PHARMACEUTICAL COMPANIES, and many other corrupt entities here in the state I and this dying middle aged man live in
He is dying
No help of insurance anywhere
This is what I pray for
The ones who have no more fight in them
His family wife children grandchildren await his passing
This kind of sadness I still go through
No doctor was LISTENING TO ME
like I was saying before
At the doctors office ready to hand over information so he could educate himself and that I was weaning myself off of Xanax and that because I fired my shrink
He would now have to script me the medicine
I want it out of my body so badly and I know it is going to take a long time
I have been on it since 1995 via my cardiologist
And getting that out of the way
I then begin to tell him what's been going on since the last time I seen him
And that is every four weeks

Dear friend
It is not fair for many
It hurts to hear stories such as this
And I pray for him and his family
Love
Me

It is received
And very much felt
It feels so darn good
To hear them
in most time
short lived
a moment bliss
Thank you
Me

That was upbeat beautiful and awesome stuff right there
Hoping you feel a hug from me
I three that
i also live in my bedroom most times
I am lucky to have two full bathrooms in my apartment
Corissa's bathroom the general company
I lucky to have a bathroom in my bedroom
I have it set up like a lounge
such like that at a nice quiet piano playing
night club lounge
It has a love seat and other living furniture in it
set up in sections
The bedroom is 13' wide 27' 6" long
The only thing missing in it is stove and sink kitchen
They are too my favorite things to wear
when I must
Most times I am shirtless
The material against my back
kills with burning scratching pain
I am sure you get the picture

So he my doctor was so quick with me
a little more than seven years with him
it just burned me
Not saying anything
My daughter says
I don't like how you were treated mom by the doctor
"He" was not interested
It wasn't his field
That does not make it okay
I want all my doctors on my train know each other because of me the patient
And see I have been with him since before any surgeries
"he does not seem to care I have become just routine to him"
and I do not want to start with yet another one
Love
Me

I had another psychology appointment today. I talked about so many of the things that have been on my mind over the past week. I think I might have overwhelmed her with what is going on in my life and I only had an hour. She agrees that it might be a good idea to try to get away from my husband for a weekend, or even a little longer. Especially if he continues to not want to listen to me, get defensive whenever I say anything no matter what it is I say, and if he continue to be verbally abusive. He has been rather nice this past week with no drinking, so I am happy about that. These are the times that I am reminded of the person that he can be, the person that I fell in love with and married. Trying his hardest to put a smile on my face or even laugh. I just wish he would listen to me. I have been good at watching how I say things so that they can not be mistaken as being negative. I don't know why it did not dawn on me before, my husband is pretty much deaf. He reads body language to determine emotion and tone in what someone says since he can not hear it all that often. Is he perhaps mistaking my pain and depression for a negative tone?

My parents were trying to get me up to there place sometime soon. I was asked on Friday if I would like to come up for the weekend. Maybe packing up a weekend bag and heading up with my dad next chance I get would be a good idea if my husband and I can not talk about some of our problems. I am not sure how I would handle the long 3.5 hour ride, but it is the only place I can think of to go to and I have not been up to their place in a few years. I spend most of my time in my pajamas anymore, except for doctor appointments, so a small bag shouldn't be too hard to put together.

We also talked about trying to work toward some goals. As odd as it may sound, I would love to be able to try cooking again. Maybe not every day, but at least every once in a while. It is something that I loved to do and is something that will let me feel like I am helping out again. I told her that I would like to be able to loose my crutches as well, even to get back to a cane or walker. Since I am still dealing with a non-union from a surgery I had last January to fuse two joints in my ankle, as well as dealing with CRPS, I know that may not happen. I made sure that she knew that it might not happen as well.

Working toward some goals and making me feel like I am not just a drain on everyone in my life, will probably do me some good. Between the pain, depression and all of the stress going on at home, I just do not have much motivation right now which makes it difficult to work toward those goals. Every time I try, it seems like one step forward, three steps back.

Guess I will just have to take it one step at a time, one day at a time.