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05/13/2012 03:00 PM

I'm not sure where to turn to...

MrMike007
MrMike007  
Posts: 22
New Member

Over a year ago, my wife was diagnosed with RSD. I have been very supportive of her and try my best (which sometimes doesn't seem enough) to help, to understand, and try to pick up when she can't do things. I am frustrated, tired, and perhaps a bit depressed over all this. Today I feel overwhelmed with everything as she seems to be taking her pain out on me. I feel like I cannot help her and everything I try to do is my fault especially if something doesn't go right. I would like to try to find some form of support for spouses of RSD, but what I have seen so far, doesn't offer me some sort of forum where I can ask questions and seek answers or even to hear someone to say, "I hear you." Am I in the right place or should I continue looking elsewhere?
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05/13/2012 03:21 PM
Colleenj
Colleenj  
Posts: 2152
VIP Member

You will find a lot of support here. Most of the members in this group are the people suffering as opposed to being a family member or friend.

Your wife is probably really frustrated. It's hell to be in pain and be frustrated with your situation. I know because that is how I feel. They are trying to keep my pain under control. Some days are OK, others I just want to sit and cry because it hurts so bad.

I guess the best thing I can tell you is to not take it personally when she is crabby or ungrateful. Have you considered a counselor for yourself?

I'm sorry, but I have no idea what RSD is, so I'm certainly not in a position to say much more than I already have. You are welcome to come here and post as often as you like to ask questions or just scream if you need to.

dais Colleen shammi th


05/13/2012 04:41 PM
cindy61
cindy61  
Posts: 540
Member

Just try to tell your wife you are doing your best but if she needs you to help her to just ask nicely. RSD changes everyones life in the house and you want to please her but you don't have ESP, that you can't read her mind. Tell her you love her and want to help but don't want to be treated like a slave. A please and thank you would be nice. Remind her your life has changed too, you may not have the horrible pain but it is hard to see someone you love in so much pain. Try to ask her to be patient and eventually you will get the hang of what she needs. Also tell her the RSD is the enemy not you. Let her be upset and angry because it is a faze she has to go through but not to be angry with you because you are on her side.

I hope this helps. I am the one who has RSD so I know how she feels but when I was 30 my 1st husband was dying of cancer and this is what I had to tell him.

Good luck, Cindy


05/16/2012 06:18 PM
MrMike007
MrMike007  
Posts: 22
New Member

I apologize for not responding sooner. Between being sick yesterday (an asthma attack which drains me of all my energy) and work, I have little time left in the end of a day. I thank you both for your responses. Colleenj, RSD is Reflex Sympathetic Distrophy. It is a misfire of the nerves to the brain which tells it that there is pain or a burning sensation when there really is none. I have found that the divorce rate among RSD patients is quite high, along with the suicide rate. This scares me.

She was advise to get a powered scooter or power chair to help her when she wants to go out with the grandkids or to the mall. The Scooter Store said that she should be approved and to fill out the paperwork with her doctor. Today they say the paperwork was filled out wrong and that she had to see a physical therapist. I sat there with wife and her doctor and filled out the paperwork and now a P/T?!! They never said anything about this beforehand. Someone is lying and it's the Scooter Store. Very misleading and a bunch of liars. Now, not only am I tired and frustrated, I'm very angry. This whole thing is starting to become a real nightmare!!!!! Aaaarrrgggghhh!!!!!!!!!!!!!!!!!!!!!!!!!!

Post edited by: MrMike007, at: 05/16/2012 06:19 PM


05/17/2012 06:09 PM
anji
Posts: 18
New Member

Hi Mike,

I have CRPS and it sucks butt big time. I don't have a husband and it's going to be a hard sell for me to ever find one, blessed I am with this issue.

I can easily see a high divorce rate and a high suicide rate. I'm incredibly depressed myself. I can only imagine what it's like seeing someone like me, suffer. It has to be hard. My ex hubby was a soldier who suffered from PTSD, and I remember how helpless I was to the situation.

We needed family counselling and we never got it. I recommend you guys go for couples counselling to specifically deal with this...

I hope you are well tonight and - I know the road of chronic injury/illness is a difficult one in all aspects... there's hoops to jump through and all that crap. But, don't worry - I'm certain you will pass the criteria for the scooter...

Use these hurdles to get closer with one another... and learn to laugh at really crappy situations. Imagine yourself in a really bad sitcom with CRPS Tongue

anji


05/20/2012 05:12 PM
slada
slada  
Posts: 2417
Senior Member

Sending you all many hugs from CanadaSmile Smile Smile Smile Smile Smile Smile Smile Smile Smile Smile

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05/21/2012 07:21 AM
SSLMD
Posts: 1023
Member

RSD/CRPD can sometimes be helped by ketamine infusions. Ketamine is a dissociative anesthetic that blocks a particular calcium channel in nerve cell membranes called the NMDA receptor. There are various treatment protocols, generally managed by an anesthesiologist/pain management specialist.

05/22/2012 01:51 PM
MrMike007
MrMike007  
Posts: 22
New Member

Unfortunately, we were turned down for the power chair. On The Scooter Store's web site it says that 1 in 10 people qualify for a power scooter or chair. I don't understand how this chain of stores can remain in business! 1 in 10 approvals makes for bad business numbers. I remember the commercials on TV and how they say they will be sure you get a chair or scooter. Yeah...BULL! We eventually bought a regular lightweight wheelchair for her.

She gets so mad and angry and frustrated that she seems to take it all out on me. When she does, I try to hold my temper and try to be reasonable with her. Other times I just want to toss her butt out of the house. Counselling is out of the question as she doesn't want to go. I am a bit more open minded to it. She has mentioned the Ketamine treatments in the past but has not said if she was or was not interested in them.

Right now things are OK and there is calm in the house. The last time we argued about her RSD even the dog left the room. I hate these arguments as they are counter-productive and I just don't like arguing in the first place.


05/22/2012 07:22 PM
anji
Posts: 18
New Member

It must be frustrating... hell, it's too bad she won't go to counselling because, it could help you BOTH... is she afraid of being called crazy or making up stuff?

I was at first but - surprisingly I've had awesome support from the docs with regards to that, which made me reaching out to a psychiatrist WAY easier, when things got really bad.

Are you able to try and find a scooter somewhere? I know this might sound crazy but - it might be worth going to local old-aged homes and asking a nice admin-type person, if they are aware of anyone who may be interested in selling their scooter. Sometimes, they get to a point where even a scooter is beyond their means and it sits somewhere, collecting dust.

Not sure if you have kijiji in your area... or, even contact your local salvation army and see if they have any suggestions. It's a shame you weren't approved.

If I could help at all, I would, honestly!

If the dog high-tails it out of there, maybe you should too and let the situation calm down a bit. Maybe it's worth going to counselling, just for yourself. That way later if you decide to leave, you can honestly say to yourself (and feel good, no guilt) that you really truly DID do everything in your power to make things work. Then the onus and guilt, is left upon her.

Anyways, I have an early appointment for my stupid arm, that I have to wake up for... have a good night and I will keep you in my thoughts!

anji


05/22/2012 07:23 PM
anji
Posts: 18
New Member

You know... thinking about it... I wish your wife would realise how fortunate she is to have you to help her through this. I have no one and would give anything to have that kind of support...

*sigh*

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