Spreading continues...what to do
 

I have had such a struggle with acceptance. I have also stuggled with being on narcotics forever. I have done water therapy, biofeedback and other relaxation techniques to come off narcotics. It worked briefly, but life was no better. I was clearer which forced me to view how life will be. A lot of crying. Choices- i was put back on narcotics and to think about SCS implant. The trial(which i had over a year ago) helped but was very positional. Fear of spreading with surgery- spread? I now have generalized RSD. We don't think the tendon/nerve surgery worked-so if nerve is still compressed my RSD will continue to spread. Ketamine-i was recommended ketamine coma. I won't do that for a treatment.
Last week I woke up with RSD in my low back.
momof4

Dear dear Momof4....

my heart is breaking for you..I feel your desperation and pain..I believe we al go thru these times and questions and even when we believe we have hit a plateau in our life, with our RSD..we still have times of feeling desperate and low...I am so sorry you are feeling emotionally spent lately..and spread seems to be part of the big picture..I can say that although RSD has its way with us...all of the time..I think what has helped me more than anything , it was not my SCS nor meds...but I have the nicest counselor..She is so patient and kind..I fought this type of intervention until I put down my miracle..who am I wand and accepted that I need her....DO you have someone to talk with?? I think and have resided myself with the fact that my RSD is like the skin on my body..It is part of me and I must accept it and its workings, advancements..I must be open for its changes too...So in turn I prepare my mind and try to be one step ahead in securing my thoughts that I am loved and ready, for we can't predict our ever changing RSD..we can only try to ride the waves the best we can..oh and we will have our days of feeling crushed and saddened...but..You, Moma are loved also...try to find the place in your life to not judge yourself nor place demands on yourself.. and accept we are special..God has a road for us..one we must learn from our trials and possibly take something positive from our RSD...oh believe me..I have many names for our illness ..and it ain't just RSD...I wish you peace and tranquil thoughts and a easier time of it..today forward!!

Much love, Kathy:grouphug:

Kathy, Thank you for your special and kind words-they really meant a lot. Yes, I do see a psychologist weekly which has been very helpful.
thanks, momof4

Mom...This is so not an easy fix, if ever but I want you to know I care in the mean time!! What you are feeling is so on track with our daily RSD struggles..and I am sorry...

Hugz, Kathy:grouphug:

Hi I am sorry that you are going through a hard time though with RSD I know there is never an easy time. Have you thought of ketamine infusions? I am glad you have someone to talk to. I too have my periods of being very depressed where crying is a part of my day. Being in pain and having a condition like this takes a mental toll. For myself I just try to get through my day and focus on that one. I get too overwhelmed when I think of the future. My pain doctor said a good thing to me on my good days do the best I can and on the bad days do the best I can. You stated that those treatments worked briefly but life was no better. Do you feel you stopped them to quick? Do you think now being a different time it may help to try one of those things again? Take care and hang in there.

I'm so sorry. I am almost certain that I do not a compressed tendon or nerve injury, but my RSD spread anyway. And I had generalized symptoms for a long time - hands, feet, intestines. Ketamine infusions (outpatient, 150 mg each) helped me get back on my feet and off the narcs, how long the infusions will work I do not know.... but I am now back to work fulltime and trying hard to adjust to a "new" normal. The support of my family was an integral part of me getting better.

Lost Mary posts to the SCS/Pain Pump Board. She has had great success with her pain pump. Intrathecal baclofen combined with opiods has helped many people get their lives back.

Please don't ever, ever give up on future treatments. Its a constant battle with the insurance companies and attornies, etc for us to get what we want and/or need. You deserve to attempt to live life to the fullest.

XOXOX Sandy

Hello Momof4

For me acceptance was the hardest to come to terms with. I live with full body RSD/CRPS with some organ involment. It was hard at first and I fought it all the way. I didn't want to be dependant on meds and I just wanted my life back.
Understand we can not allow ourselves to be defined by our condition. You are a wonderful person who still has something to give. Some days are hard and you want to quit but you can't. You may have to tell your family today is a day I need to take it slow. It's not a good day but it will pass and tomorrow will be better.
If you don't have a personal relationship with God now is the time to visit a local church. Every day I ask God for him to cover me with his peace that passes all understanding. I am telling you it's a wonderful peace. It took me a couple years to accept my condition and admit I couldn't do this alone. I have some tough days but they pass. PM me if you want to talk.
Take care,
Sherrie

HI Momof 4,
That dark place that overcomes all of us at one time or another , some more than others, is so painfully hard to endure...
I , too fluctuate between acceptance, anger, bitterness, fear, and a sense of quiet resignation.

I am curioius about the block of time when you were off the narcotics and feeling, better, when it worked briefly for you...I hope you are able to get back into that frame of mind, and still try and practice those methods of pain control and maintaining some kind of peace of mind..

I'm having a hard time lately, (I think it's spreading into my hip and back) and the thought that keeps me going sometimes is that 'it's always changing'
the level of pain changes, my mood changes, my emotional well being changes, ...so when I'm in the abyss, I try to hang onto the thought that this desperation will change, I'll have brighter moments, brighter days inevitably in this cycle of change.
I think I'm rambling but I'm at work and trying to convey my thoughts while being surrounded by work distraction. I just wanted you to know that I (we) understand the constant turmoil that we find ourselves in, sometimes punctuated with glimmers of hope.

Sending you hugs
Hope4thebest :grouphug:

I feel your pain... I am only 20 and my rsd has gone from my arm- to my leg, my back, shoulders-- and I just had my wisdom teeth out, and I think it went into my face too. I have nothing to say except i'm here with you. Just keep talking to other people with rsd, its one thing that makes me feel not alone.

Annah

When you're watching RSD spread it's plain scary
 

Nothing prepares us for the day we notice the RSD has crossed hemispheres, but when it does, our lives change forever. More pain, more damage and less life is all it looks like and in some ways it's true, but maybe this is the time to modify how you deal with problems that come up. I've always called it "Why compete with yesterday when that day is already over and we'll never do or be exactly the same way ever again complex?" By the way, we're not really comparing, we're competing.

The only type of change that's easy to accept is the kind that we've created for ourselves, but when something like RSD comes along that for unknown reasons makes our body almost a stranger to us, it's just plain hard. Don't compete or compare with yesterday but instead just try and work with whatever you still have headed the right direction today. Some days the list might be a little shorter, but we still do have many options each day. We might just have to work a little harder to get the most and even more importantly give the most out of it but they're still there. Now we just have to widen our horizons enough to hunt down new ways to live within the new rules and conditions our body and disease is placing upon us. You will in time I promise, it's just right now you're in the grieving process that we all need to go through. In time you'll see that not all is lost, just a little more. There's a world of difference I can assure you. Best of luck, Bob.

This a great thread! I am in the depths of depression and acceptance now. Just very, very low. Kids growing up and away, fighting with w/c and SSDI, trying to adjust to my new meds and treatments. Just trying to be. Sometimes I feel like I am on one of those playground spinny things and I can't hold on anymore. Lost, confused, foggy from meds. I would like to just lie down and rest. Everything you all have said is exactly what I feel.

Thanks my friends for helping me up today. I really needed it.

Much love to all...

Kim

hi sory for your spread..
 

Multi-spread?
I recomend subcutanious lidocaine infusions, they work systemicly, when I started getting lidocaine infusions 2 years ago I was told that "subcutanious lidocaine infusions were given when there is more then two limbs involved and when there is spread happening".
And something you can do for yourself is take grapeseed extract.. it contains 20x more antioxidents than vitamin C. (and also up your omega 3's) I would start the home regime ASAP, studies show that vitamin C (antioxidents) can stop CRPS from taking hold in up to 80% of injurys and surgerys if given for 50 days consecutivly after the injurys.
Talk to your doctor about the subcutanious lidocaine as well it has realy made a diffrence in my life.

Good luck hon
:hug:
~ Sandra

ps.. it was too late for my spread so I can't use me as an example, but I do know antioxidents tone down my flareups.

Dear Momo4;

I am so sorry to hear of your struggle, challenges and pain. Acceptance....this is just one of those illnesses that can not be accepted. I too have done all of the above and to no avail. I too have gone off all of my medications from time to time to only bear the unbearable and then I think why, I had multiple surgeries, I have had tendon surgery, nerve and both feet are now fused. I have been dealing with this for almost ten years, acceptance is difficult. What do we accept? There is no logic to this, it is so tempermental, how can we truly mentally reason with this. The highs and lows, I mean at 11 am I am doing good and by noon I can't walk. (I mean seriously, who does that!) So "what to do"? We do the best that we can do at the moment and thats just the way it is. Always, always support yourself no matter where you are at the moment. Reach out as you have to the many caring people on this forum who do understand. Meditation, exercise (when applicable), pray, hope, and laughter. Acceptance, I don't think will fall upon me, but living in the moment, good or bad has helped me tremendously. Treat the person, not the disease. Inside all of this misery is a wonderful person "you" with a painful debilitating disease. Pain is bad we are not! God Bless you, this thread has truly touched the heart.

Jeanie

spread
 

As I have continual spread I too have the feelings you all described..My son is going off to college in august and it is killing me inside. He is my light. I am so sad and lots of mornings I just don't want to get up anymore. Hubby is around but does not deal too well with this-mom cries when I tell her- friends get tired of hearing it....Just want to give up!

Deb