I just want to SCREAM....
 

:(Why is it that my husband nor anyone else understand what im going through. Don't get me wrong i love my husband dearly but I just hate living like this. Ever since RSD I have been fighting like crazy with my husband. He is really no help to me just another burden added on top of my RSD. I handle all the cooking, deciding of everythiing i mean everything, cleaning,organzing,etc. I am not very mobile anymore im in constant pain and agony and i have came to a point where i just want to say to hell with it. I can't bear this pressure anymore nor take this pain. I don't know where to go or who to turn too. i am just so miserable with this RSD its ruining life. So sorry for coming here ranting but i have been holding this feeling in for so long and i just feel like i can't feel anymore. If i speak or say something about what im going through its as if oh here we go again. so i just shut down and hold it in. I can't stop crying at this point and my husband is on the tv/video games for more than 3hrs a day. guess waht im doing while sitting here in constant pain 24 hrs a day..making menus for the family and making sure everythibng is organized. my main problem RSD are is my hands and arms. I am in so much pain doing this but i just had to let it out somewhere. Ok i have to stop but thanks for reading and so sorry for the nonsense.

:)
 

Its not nonsense... noone understands no matter how long we live with them or know them unless you live the rsd everyday. Its really hard, but for me when i just tell myself they dont understand ignore it... I can stand up mentally and move forward. stay strong pick your chin up and lets say a prayer for strength and wisdom in our words, and the understanding and compassion from our family:).

I am doing so much better after my ketamine infusions but I still am slower and have achy pain, and get tired early in the day. My family still doesn't understand that while I have less pain i want to be gone and doing things all the time because I dont know how long this feeling will last. It could be 10 years or 10 days... or 10 minutes. Even while better than before it is still a fight to stay above water. I look at it like a marathon run, we just have to keep going no matter what because we don't have any other choice. I got in a fight with my mom yesterday and it spiked my pain. Hang in there, and don't worry. We all rant and rave and i am sure there are hundreds out there feeling like you do. Take 5 minutes and close your eyes and do some meditative breathing to calm your nerves... here's to a peaceful Sunday.

Okay Momma..this is not nonsense.. I have to side with Hannah,,,that is exactly my first thought which she picked up on also..This is REAL!! Our pain is real and our lives being broke from our hands is REAL..AND I think we all hit the point that you are at ..very often..I can feel the pain in your voice and also feel the pain in your cry..Please, journal your feelings..all of them good and bad..nobody needs to read these exerpts..but put them on paper..My dear friend told me last week to go make a new friend..I was crushed..she later apologized for saying that saying she can not fill the lonely, hopeless feelings that I feel..she broke my heart and she knew she did..I spent much of the next day by the water alone...my point is, others can not feel our desperation..between pain that never ends..and our loss of our past and sad future, no wonder we feel like a pressure cooker ready to blow.... say a prayer..ask for strength and I promise you after you journal, get some rest..tomorrow will be better... we will have our highs and lows..I am so so sorry..but please take comfort in knowing you are never alone in your feelings and we are here waiting to here how you are..... Much love, Kathy:hug:

Hi! I have been through the same problems as you are dealing with. I have always been the one to cook clean and handle the children. It is so hard having to try to rely on your husband. And man do they not understand how we hurt and how this RSD just ruins our life. I am only 28 and have been married almost 10 years. My husband is finally coming to terms with this and the toll it has taken on me. We still fight and argue and I get that same here we go again when I say I hurt, but atleast he has started helping me out with dishes and laundry. I know he loves me but he doesn't understand me and they way I feel like you people on here do. And for friends I have lost all. They ran like hotcakes when the cane and wheelchair on occasion has to come out. But in all this being said I have finally come to a realization that I just have to ask God and pray to give me the strength everyday just to get through it. Not all days are good and I still have those days where I hate the world. If you ever need someone to talk to I'll be here. I always can use someone to talk to too. Hope your feeling better! If you need some one you can PM me. I so now how you feel.

Dear Mom, Please, please know that you are not alone. I often feel like you do, but (thankfully for me--and probably for him!), I do not have a husband in the mix. One of the things I finally had to do was take all the "shoulds" out of my life and focus on what has to get done. Some days it happens, and some days it waits. I do understand the pressure of children, I raised two by myself, but try to focus on making memories. Some times when it is really hard I do have very dark thoughts. I have found a good psychologist that has helped me. There are some psychologists that deal only with pain patients and often times they can help with getting you into therapy for little or no costs. My wish for you tonight is for peace in your soul and relaxation for your body. I think that from what I have discovered, that you probably find a fine group of friends here that care and understand. may God bless you on this glorious spring day, Lisa

Thank you so much ladies for this it means so much to me. I am a lot calmer than before but my pain level is beyond i mean way beyond a ten. I wanted to go to the ER but i know it will be another dead end for me. I will just go to bed and try my best to rest it off. I have not forgotten God I will remember to pray and tryto be strong. Thanks for understanding and thanks for just being here for me when there is no one else i truely appreciate it. I really hope i don't flip out like this again. Journaling won't work for me as my hands are bad. Maybe someone i can talk to perhaps. Off to lie down in bed adn thanks aginan.

Such wonderful support here!
 

I honestly don't know what I'd do without this wonderful place.....

Everyone always jumps on the posts when one of us is about to break....:heartthrob:

There's no such thing as 'nonsense'......
This is the place to let it all hang out....

...we're all in this together momlovetobake....
Sending prayers your way....... "Shalom my Friend..... peace...."
http://dl4.glitter-graphics.net/pub/...buj3406kha.gif

Thanks so much rrae

Hi Mom, Please not to worry about sharing your pain with us. How many tears have been shed by those with RSD? I know a huge amount.I've had RSD 15 years, and I'm 61 years old. I had breast biopsy, benign, but immediately following the surgery I started having frozen shoulder. Wasn't diagnosed for 4 years.
When I was 25 my mother died of cancer. I had the privilege of being with her during her surgeries, going to MD Anderson Cancer Hospital in Texas, Mexico, and the final 4 months. The pain and loss was overwhelming. Then my father became ill early, and cared for him thru his death. I went thru counseling for 2 plus years weekly visits, sometimes twice a week. Journaling was a huge help to work thru my feelings of loss & grief. The stages of grief include anger, so I wrote many a letter, reading it to my parents. I was so sad and missed them so much. It was even worse, that's my mother's death at age 46 was because of neglience of her Dr. We went thru a trial and court agreed 100% and my Dad's death was during the night and I found him. I had a wonderful therapist. When I was diagnosed full body RSD, my neuro suggested I see a psychiatrist. So for the last 6 years I've had a wonderful psychiatrist, who also is a neurologist, and pharmacologist. I've worked thru a lot of feelings including issues with my husband. We have one daughter-who waws 15 when I got RSD. We were so active, playing tennis 5 days a week, traveling, water and snow skiing-other sports-so difficult to loose all of that. RSD is change, not just for us, but our family. Our daughter, who now is married 10 years misses terribly our special times together. Thankfully she and her husband are extremely close and both are active.
At the beginning, my husband didn't 'get it' but when he started reading on neurotalk, he began to understand the tragedy RSD brings. Our daughter is a court reporter and even had court cases of RSD. Hearing what others went thru was very painful to her. They both went with me to therapist and that helped them. We live in Arizona. My husband started doing all the grocery shopping, picking up my meds etc. My taste buds changed, so am mainly vegetarian except salmon and scallops. My husband grills fish and meat, He picks ups salads already ready to serve. Fresh fruits, etc. I do a little house work, but he does the majority.
I always thank Darold for going to the store and pharmacy. Our daughter and son in law help too, which we are grateful for. I used to keep my pain and feelings to myself to spare my family. But, felt that was not healthy-not honest. When I started sharing my feelings and how bad it was, my family started really understanding how bad RSD is. They all started researching it and was so much more compassionate. A huge difference. RSDSA shows RSD on the McGill Pain Index as 42 in a scale of 1-50. I know this is miserable- I have a room-my pain room that has a single bed in it, tv, books, music, I need quiet time- nap time sometimes. That helps. Walking is so important-when I slack up on it, my husband says you are supposed to walk-I read it on the RSD web site. Before he understood, it was terrible-I felt like getting my own apartment, but now I feel compassion from him and others. Do you have a printer? If you print out particular articles-that should help others understand more what this is like. I hope this helps. Do you have a support group in your town? I've taken friends and family members with me.
I still have a lot of friends that don't understand this and have withdrawn. It's sad, but I've found I can talk a little to some and not at all with others.
I still journal and that is helpful. I see my psychiatrist once every 2 months-First 5 years saw him once a month. It helped tremendously. I'm so grateful I found him (in the yellow pages) smiley face. Please continue to communicate with us. We are here for you. One of your new friends, loretta
:grouphug:

My heart goes out ot you. I am so sorry to hear you relate about all of your pain and requests falling on deaf ears with your husband. I can't even imagine it. I am so blessed that my wife is also clinically trained. While I go into my rants once in a while about all things CRPS and RSD, she understands and wants nothing less than castration for the surgeon that caused our situation and is extremely helpfull when it comes to my physical limitations. She is an angel.

I think there needs to be a meeting of the minds for all the spouses and significant others that have to deal with the poorly understood issues that we all deal with! Perhaps your husband could read some of the posts?

Dear Momlovetobake, I too am so sorry you are in so much pain. This illness is so devastating to not just us but our loved ones as well. I think (on behalf of your husband) he is very scared and is just hoping if he does not react to it, it will go away. I too was the leader of my pack, always in control, patient, encouraging, and a caretaker of many of my family members in thier time of need. But as you stated, it begins to deminish as we are simply not able to do and be that person anymore. I think the turning point for me was when I came out of my wheelchair and pinned my daughter up against a wall. They all just stood frozen as my son pried me off of her. I was shaking so bad, and we all started to cry. I was just dealing with so much physical pain, and she was just being a normal 16 year old (mouthy), but I snapped. I could have hurt her. That was when we all knew that something was severely wrong with mom. I have come a long way since that day, knowing I would never go there again. So Mom, scream if you need to scream, get counseling if you need to, learn meditation, take time out, find a quiet place to go to when you feel the need to take a break. I have a room that is my sanctuary, I go there three or four times a day. I have candles, a heating blanket, tapes, etc., to relieve the stress that this induces, and I always begin my quiet time with prayer.

It is the loss Mom, they miss the old you and they want you back. It is a lifestyle adjustment for the whole family, unfortunately, we get it first. Be patient with yourself and your husband. He will begin to understand as the fear withers and prayfully he will step up to the plate. As Loretta stated, print some articles out on the illness and the devastating effects that it causes, that was very helpful for my husband and he then began to explain things to the kids. Time is a great healer. God Bless you and your family, I will keep you in my prayers.

Jeanie

P.S. I am ashamed of that moment and have never told a soul. Don't allow your frustration to take you to that dark place.

Dear Momlovestobake,

It is late in the evening and I hope you have found some peace that you needed earlier in the day...

Before RSD, I was the one who planned it all...the outings, the shopping, the cooking, taking care of everyone...my children are grown and live elswhere, now, but I was still the one to try and resolved their issues with them...I still over see my 98 year old mother who lives independently but is still 'dependent'..

I work full time (gotta work) and literally fall on the couch as soon as i walk in the door, from exhaustion and pain..:eek:

For months now, I've had to relinquish many of the tasks/things I used to do..
write the bills, shop, cook, cleaning, etc, etc. I had to..The pain consumed all my energy....I no longer cook, but I put a healthy frozen entre in the microwave, or make a salad..or a sandwich for dinner ..my spouse does his own thing for dinner, etc.

We each do our own small loads of laundry..I do what I can with the chores....I no longer write the bills, which I had been doing for years...now my spouse has taken over that task..

My wish for you, Momlovestobake, it that somehow your household gets reorganized to lift the burden from you of all the responsiblity..It's too much for you..

My dear friend, please try and let go of the tasks and chores that are overwhelming you..eventually your family will adjust and they will, out of necessity, (such as if they want to eat..they'll have to pitch in with the cooking..if they want clean clothes..they will have to do their own laundry...)

You need to have some time and energy to deal with this monumental transition in your life, the emotions around it, and the rest that you need, and to dig deep and find ways to cope internally..

I hope you awake tomorrow somewhat regenerated, with some ideas on gradually how to adjust your household to your needs...
Sending hugs of support
Hope4thebest:hug:

Jeannie.......We've all had out moments. I hope that you are able to forgive yourself.



MLB..........My situation is different from yours in that my marriage was troubled long before y RSD. I always thought we'd be able to work on things when we got the chance.....we worked opposite shifts so we had little actual time together. Almost 6 years ago when my pain issues started, we suddenly had a lot more time together.....Let's just say now we are just biding our time untils the kids graduate. My husband has taken over cooking and shopping.....which would be a good thing, but he refuses to buy anything healthy or fresh fruit and veggies, etc.......so be careful what you ask for, they usually don't do it up to our standards !

My friend's situation sounds like yours. Her pain is so much worse because she is trying to do everything she used to. If she doesn't wash the dishes one day and asks her husband to do it, he'll say, "Well, you washed them yesterday" or "If your friends were coming over, you would have done them."

People can be stupid and not think before they speak

Finz, yes I have asked to be forgiven and have forgiven myself, thank you so much you have a kind heart.

I only shared, because this illness changed who I was. I am not a mean little person, heck I was the Kool-aid mom. Just because one is in pain is no reason to behave so irrational, and I knew that, I just lost control. I and my family had to find some coping skills and we worked together to accomplish that. That was many years ago, now my daughters will throw a joke out about it and they will laugh, and that is okay laughter is good for the heart. We need our family, especially our spouse to at least hear us. I searched the internet, on chronic pain and family, and found some wonderful articles and printed them out and still do at times, so we can all stay on the same page.

God Bless All,

Jeanie

Jeanie~

I appreciate you sharing that incident with us..I have even more respect for you if that was even possible. It shows what pain, constant pain and the unraveling life can do to someone..You shared a bit of your life that you had not shared with others before and I think that is wonderful and an honor... We are human and RSD really pushes our buttons... You are good my friend..just great!! Never be ashamed for handling things the way you did..I am sure you got your point across at the time...

Rest well .. sleep tight and see ya in the morning!!

Hugz Kathy:grouphug:

I have been dealing with my pain for such a long time. I try to not be a burden. I figure; "Who wants to hear me complain about how much I hurt?" So I suck it up like the good soldier we boys of the 1950's and 1960's were taught to do.

My brother's wife is dealing with a chronic pain issue and he often comments about how I seem to handle my "problems" better than her. Little does he know how much it is eating me up inside.

About once a month, I can't hold back any longer, though. I let loose with a really gully-washer. I will lie in bed and, between sobs, wail about how I want my real life back. I will cry about all of the physical things I can no longer do - things I used to be real good at like playing bass guitar, repairing automobiles, hiking and climbing, carpentry, home remodeling, landscaping, gardening, and baking. Boo-hoo. :(

These are the times that my wife is reminded that, even though I may appear to be functioning well and I am holding down a decent job, I really am not having a very happy life.

After about an hour on the pity-pot, I can pull myself together and I am okay. But letting loose like that is very therapeutic for me and, I think, my wife. She gets to hear all of the things I might otherwise keep bottled up for good appearances.

I understand your pain
 

Dear Mom, reading your post I could feel your frustration and of course i know your pain so well.

I dont know if you remember my post- but my husband walked out on me the day after our 12th anniversary with out a word,just abondoned me.

I have been terrifyied. That was the end of December.

But i have to tell you in one way it has been a huge relief. it was so so diffucult to pretend to be normal - the pain to make him a sandwich for lunch , I would have to carry the tray in to his den, the pain it caused me,

I have full body rsd pain. then the pain to try to keep looking nice the pain to try and keep the house nice

the additonal pain to try to cook dinner etc etc I think you know what i mean.

When we are in so much pain it is so diffucult to try to appear normal and keep up with minor daily schedules. It was for me.

But if I didnt I felt like a sloth.My husbands face when i was in bed for 4-5 hours in the middle of the day said it all.

I forced myself way beyond my ability and i would pay a huge price.

My husband traveled alot, Thank God, as soon as he would leave I would collaspe in bed and I would be there until he walked in the door again and I would begin to play the normal routine again in excrutiating pain.

I dont know if any of that helps but I do understand, for that reason I am so happy to be alone in an apartment.

I never thought I would say that ,I loved my husband a great dealand was devastated when he left me, but it was just too hard. too much pain. you are in my thoughts and prayers. dc
I was just reading this to check my spelling and was thinking how terrible this monster is that it makes being alone and losing someone you love so dearly a relief..its so horrible.

Hi I am sorry for everyone's battle here. I am not sure if this was mentioned cause I skimmed the replies but what about couples therapy? For me when someone says something or their actions are upsetting I try to tell them how I feel. Even if they don't change at least I don't keep it in and lets things build up where it becomes out of control. Sometimes too one just needs a good cry to get the emotions out. Feel better all

Bassman,

Wow, great post! Couldn't have said it any better (played bass in the "day," too)!