NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   RSD and Your "Emotional State" (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/93290-rsd-emotional.html)

nancyinLA 07-11-2009 11:40 PM

RSD and Your "Emotional State"
 
jus' wondering if any of u have as much trouble as i do w/depression, crying....just ur emotional state going crazy. i describe RSD as affecting my pain center, my temperature center & my emotional center. i do take Lexapro 10mg.... along w/Deplin (to make Lexapro work better). i also take 1500mg of Neurontin. (& meds 4 epilepsy) let me hear from u!:grouphug:

GalenaFaolan 07-12-2009 02:22 AM

Here's an article I wrote that should help you understand the emotional impact of rsd on us. Understanding and Coping with the Emotional Effects of Complex Regional Pain Syndrome

RSD affects all of our sympathetic nerve systems that regulate emotions, body temp, blood pressure, etc. It's why there are so many symptoms with rsd.

Hope this helps you!

Hugs,

Karen

fmichael 07-12-2009 04:17 AM

Dear Nancy -

We have all gone through what you are describing, one way or another. There are two saving graces we have going here. First, the psychiatric community has identified two brother/sister disorders as being specifically due to a medical condition, on account of which we can use these DSM codes for treatment without attracting the future scrutiny (or stigma) of whomever might be inclined to say "oh, you were treated for depression . . . ." They are actually handy tools that our doctors should be employing regularly when we get an "Axis I" Dx. Those codes are as follows, omitting some technical instructions to be used be the practioner in their utilization:
Mood Disorder Due to a General Medical Condition (DSM IV 293.83)

This Mood Disorder is diagnosed when the clinician believes a specific general medical condition causes symptoms suggestive of a Manic, Mixed, Hypomanic, or Major Depressive episode.

Diagnostic criteria for 293.83 Mood Disorder Due to...[Indicate the General Medical Condition]

A. A prominent and persistent disturbance in mood predominates in the clinical picture and is characterized by either (or both) of the following:

(1) depressed mood or markedly diminished interest or pleasure in all, or almost all, activities
(2) elevated, expansive, or irritable mood

B. There is evidence from the history, physical examination, or laboratory findings that the disturbance is the direct physiological consequence of a general medical condition.

C. The disturbance is not better accounted for by another mental disorder (e.g., Adjustment Disorder With Depressed Mood in response to the stress of having a general medical condition).

D. The disturbance does not occur exclusively during the course of a delirium.

E. The symptoms cause clinically significant distress or impairment in social, occupational, or other important areas of functioning.
AND
Anxiety Disorder Due to General Medical Condition (DSM IV 293.84) [as of 10/01/96]

The diagnosis of this Anxiety Disorder is made when there is evidence that persistent anxiety symptoms, including Panic Attacks, obsessions, or compulsions have arisen out of a general medical condition.

Diagnostic criteria for 293.84 Anxiety Disorder Due to...[Indicate the General Medical Condition]

A. Prominent anxiety, Panic Attacks, or obsessions or compulsions predominate in the clinical picture.

B. There is evidence from the history, physical examination, or laboratory findings that the disturbance is the direct physiological consequence of a general medical condition.

C. The disturbance is not better accounted for by another mental disorder (e.g., Adjustment Disorder With Anxiety in which the stressor is a serious general medical condition).

D. The disturbance does not occur exclusively during the course of a Delirium.

E. The disturbance causes clinically significant distress or impairment in social, occupational, or other important areas of functioning.
From Diagnostic and Statistical Manual of Mental Disorders, fourth Edition. Copyright 1994 American Psychiatric Association

Secondly, to turn from matters of form to substance, the essence of what is commonly understood as "Buddhist phsychology" is that pain may be is unavoidable, suffering is optional. What's meant by that is that suffering is what we experience when we are presented with an objectively painful situation, and then devote our energies to either pushing away that which is (like it or not) or being attached to the way we otherwise want them to be. It was around this principle that Jon Kabot Zin, PhD. working out of the University of Mass. Medical School in the 1980's set up a program largely targeted on pain patients experiencing depression, called Mindfulness Based Stress Reduction (MBSR). It now has teachers around the country, including a number of some good ones (here) in LA. From the national homepage, including a directory to currently active teachers, many of whom are licenced psychologists, go to http://www.umassmed.edu/content.aspx?id=41252.

I was referred to a teacher in 2002 following a single 2 hour consultation with a high end pain psychoanalyst, after the so-called "pain pschologist" at the hospital where I was being treated told me that the outbursts of anger of which I was complaining, "went with the territory" of chronic pain, and ther was nothing I could do about it. After an 8 week course that meant for one evening a week, with taped guided meditations and yoga exercises for a sense of overall body awaremess, to be practiced every day in between, I was quite literally a new man. After a year and a half of struggling to practice law since I had become sick, and not being able to let go because of my egoic attachment to my professional identity - even though I had long stopped being able to net more than a few dollars a month from the practice - I was able to finally let go of it with some measure of ease, and direct my energies where they could be better employed. If you're curious, drop me a PM and I will be happy to give you the names of some very good teachers in town.

Along the same lines, is Shinzen Young (my teacher since 2003) whose Breakthrough Pain book and CD are designed to help you see to pain experience with enough concentration, sensory clarity and equinimity that you are largely free of it, or at least you are not identifying with the pain experience. One way he does this is by first having you ancknowledge where the pain is stongest in your body - if unbearable - and then finad another spot in the body which only holds a feint echo of the pain, but in which you can comfotably come to an intimate understanding of it's dynamics. The metaphor I use is standing behing a waterfall: you get a little wet from the mist, but you are by now means pulled into the vortex below. Breakthrough Pain can be obtained through Amazon. And if you want to read more about the man before investing your $20 or so, Shinzen's primary webpage, including freely downloadable reading material and YouTube videos is at http://shinzen.org/.

I hope that I you may find something of use in all of this. And that you know that there are many communities of friends, including this one, who are only too happy to make your acquaintance and be of service in any way possible.

Mike (in LA) :grouphug:

ali12 07-12-2009 08:47 AM

Hi Nancy,

I have RSD in my left leg and both arms. I developed it when I was 12 years old and am now 14. Like you, I also have problems with my emotional state. I always used to be the 'happy go lucky' child before RSD but now, I am always very emotional.

I tend to flip out at the slightest things and have mood swings all the time! I also find myself crying a lot and just generally feeling down.

When my mum mentioned it to my doctor, he told her that it was common with RSD as it affects the Limbic part of your brain which affects mood etc, though he did say in my case it could be worse because of my age and hormones etc.

Do you see a Psychologist at all? They can be helpful sometimes in helping you work through your anger, mood etc. I have a Psychologist but she is 4 hours away from me unfortunately so I can't see her that often but I have her email address and she has helped me quite a bit. I still get very frustrated and pretty depressed but it isn't quite as bad as what it used to be thankfully.

I'm sorry you have to deal with this also!!:hug: I think it is a very common symptom of RSD and most sufferers suffer from it unfortunately. I hope you start feeling better soon and if you ever need anyone to talk to, please know that I am here for you!!

Alison

mrsD 07-12-2009 09:14 AM

Some people react to high folate amounts with emotional lability.

Deplin has a pretty high dose per tablet. 7.5mg.
Also high dose folate may severely mask low B12 levels.

I'd get a B12 serum level done...if it is below 500 I'd get B12 to go along with that folate. This is very important, because if you are low in B12 you can sustain neuro damage. Did your doctor test your B12 levels? Do you know what they were?

nancyinLA 07-12-2009 03:07 PM

WOW.... thks 2 all of u! i luv having so many RSD "buds" who actually understand & can give great support & advice! i will ask about my B12 levels (since i'm taking Deplin). To GalenaFaolan: about 2 read ur article! To fmichael: thks 4 info & will ck out Shinzen Young!
To ali12: my, ur so young! i DO c a psychologist once/wk! thk goodness! and my worker's comp nurse said that she had never heard of RSD spreading from arms 2 legs!! ha (jus' visited my ft dr on friday.... may have RSD in ft now - from my left wrist, arm, shoulder) thks 2 all of u 4 support! as i said before, i fell at wk in 4/08 - was a school district's technology coordinator! broke left wrist in 2 plcs - that's why my typing lks like texting! i haven't wked since then - but being pd. very blessed in many ways! hugs 2 all!

suz66 07-12-2009 04:28 PM

Nancy: Sorry to hear that you are having such a hard time. I have been fighting this for 10months now and I understand. I spend several nights on the couch crying and praying trying to sort things out. The pain was a big driving factor, especially since I am allergic to most oral pain meds. I had emotional reactions to some meds; you might check the side effects. I didn't realize that that was one of the side effects until I asked my pharmacist. God is good and helps me to deal and I will pray that all the advice and venues you are seeking will be very helpful to you in your quest along with the rest of us. Take care. Suz

Quote:

Originally Posted by nancyinLA (Post 536574)
WOW.... thks 2 all of u! i luv having so many RSD "buds" who actually understand & can give great support & advice! i will ask about my B12 levels (since i'm taking Deplin). To GalenaFaolan: about 2 read ur article! To fmichael: thks 4 info & will ck out Shinzen Young!
To ali12: my, ur so young! i DO c a psychologist once/wk! thk goodness! and my worker's comp nurse said that she had never heard of RSD spreading from arms 2 legs!! ha (jus' visited my ft dr on friday.... may have RSD in ft now - from my left wrist, arm, shoulder) thks 2 all of u 4 support! as i said before, i fell at wk in 4/08 - was a school district's technology coordinator! broke left wrist in 2 plcs - that's why my typing lks like texting! i haven't wked since then - but being pd. very blessed in many ways! hugs 2 all!


loretta 07-12-2009 04:50 PM

Thanks you Karen for the excellent article you wrote. You wrote it in such an easily understood manner. I have a pychiatrist and he has excplained to me about the limbic system and the autonomic system. It helps to know why we have certain symptoms. Like the autonomic system is the organs in our body that are involuntary, like the heart,lungs, kidneys,That's why the sweating, circulation problems, temperature changes, And why are blood pressure goes high because of the sympathetic nervous system and then low because of the para sympathetic nervous system. As I have passed out because of low blood pressure, I'm careful not to bend over too long when washing my hair, etc.
Thank you again for the article. I always enjoy your posts. Your friend, loretta

SandyRI 07-12-2009 05:31 PM

Hi Nancy

I suffered a shoulder injury 32 months ago on the job and have never been the same. I started a LOA from my job because of severe head pain three weeks ago, and the last week has been really tough. I can't even tolerate a breeze on the back of my head some days, and it hurts even to sleep. I cry when I go to sleep, and I wake up crying in the middle of the night.

I don't remember what it was like to not hurt all the time, and how it felt to be happy.

So I totally sympathize with you. I do take Cymbalta and lots of other meds. But there is nothing that totally erases the pain, or the depression that comes with RSD.

Sandy

loretta 07-12-2009 05:47 PM

Hi Nancy,
We are all happy you found us.I wasn't diagnosed for 4 years after getting RSD following breast surgery.I had frozen shoulder, and couldn't figure why I was so emotional. I went thru 100 very painful physical therapy sessions, and also 100 massage therapy. I developed panic attacks and crying spells. I got RSD 13 years ago. It's now full body or generalized like they call it. I was in my late 40's. Very active, tennis player with my daughter, snow skiier, water skiier, hiking, aerobics, traveled a lot. When all of that stopped, it's a huge loss. I went thru counseling when my parents died young. The loss is different with RSD, but it's still loss of major porportions.Journeling helps a lot.Just getting your thoughts down on paper-brings out your emotions, which is healthy.
We really go thru the 5 stages of grief, just as if someone dies.
I've been seeing a psychiatrist/neurologist/pharmacologist for 5 years. He has helped me so very much. It is so important to get to a place where we mourn our life change and accept where we are now. Concentrate on things we have to be grateful for. Concentrate on exercise we can do, distractions, like comedy, reading, tv,meditation, Bible Reading and Prayer,I love perfumed candles, massage, keeping in touch with life long friends and new friends here on neurotalk. I love my kitty.
I take Cymbalta 120 mg. Anti-anxiety med-Loreazepam 1mg. 3xday high blood pressure meds 2 of them, double dosed. I love to swim just lost 30 lbs from being on 3200 neurotin for a long time. I have another 30 lbs. So I have goals.
Michael J Fox just wrote a book called 'always looking up' It's about his struggles with parkinsons. A website I enjoy for RSD education is www.rsdrx.com Dr. Hooshmand is retired not, but his website is still up. The part called puzzles is very good-it's 140 questions from patients and his answers. RSDSA is a national organization. I attended the all day meeting -135 attended. At the end, they said they were going to make a DVD available to all the members. It was just $20 to join. Thru their website you can find the closes support group to you by putting down your zipcode. They give you a contact name and phone number.
Have a nice weekend and take care, loretta

fmichael 07-12-2009 08:41 PM

A Pain-Processing Algorithm
 
Nancy,

It's of note how many responses this thread has generated in a short period of time. You have obviously struck a nerve, so to speak.

I forgot to say that if you're at all interested in exploring the concept of using meditative techniques in order to completely experience pain without being bothered by it, as paradoxical as that may seem, check out an article on Shinzen's website "A Pain-Processing Algorithm" which can be directly linked to here: http://shinzen.org/shinsub3/artPainP...gAlgorithm.pdf

To give you an idea of the sense of perspective, Shinzen's teacher, Jōshū Sasaki Rōshi, who at 102 is literally the world's oldest living Zen master (who's public talks I've had the priviledge of attending although never been able to study directly with him because my health does not permit me to engage in the physical rigor of a Rinzai Zen retreat) puts his role in assisting students to completely experience whatever arises in their perception, with openness and equinimity, as follows:
I am a travel agent, selling tickets between Heaven and Hell, to which you can go, indifferent as to the destination.
I apologize if anyone thinks this is over the top, but trust me, this has little if anything to do with the usual concept of religion, and everything to do with being so aware of the various aspects of experience on a second by second basis, until physical pain breaks up into manageable sensation, no more, no less.

The same concept from a Christian perspective is addressed in many places, from the writings of St. John of the Cross and in particular his Dark Night Of The Soul, to many of the 70 books of the late Thomas Merton, a Trappist monk and later priest with a PhD. in English from Columbia, who distinguished between the idea of what he called "Zen Buddhism," as that religion which which began in China and spread to Japan as well as the rituals and institutions that accompanied it, and Zen itself, something he said was not bound by culture, religion or belief. (Solitary Explorer: Thomas Merton's Transforming Journey, Elena Malits, Harper & Row 1980, pp. 106-112.)

I hope this is useful.

Mike

SBOWLING 07-12-2009 09:17 PM

Hello Nancy,

The emotional roller coaster is almost as bad as the pain. I have full body RSD (9 years).
In the beginning I was a mess. I was trying to keep life as normal as possible and not let anyone (even my husband) know how awful the pain was. I wasn't fooling anyone.

I thought about suicide (spelling ?) and how I would do it. I started to the garage and I stopped got down on my knees and asked God to help. He is the only sure thing in this life of RSD. Every night I ask for his peace that passes all understanding so I can sleep and every morning I ask for the energy and strength to face the day. He never fails me.
God has sent the people into my life that help me manage this awful pain.

RSD is frustrating. It's important to have the right doctors, medication and exercise. I like water walking and swimming at the Y. Dr. S is Philly told me the best thing I do for myself is seeing a Chiropractor. Finding the right doctors is a challenge as is the medication that will work for you. It can be done just have patience. Once I accepted my condition and stopped looking for a cure around every corner. It was so much easier to live.

Don't allow RSD to define you as a person. It's OK to cry sometimes don't spend to much energy on crying. God gives me the peace I need.
Take care,
Sherrie

GalenaFaolan 07-12-2009 10:04 PM

You're welcome and thank you! :) I have a couple of crps and preg articles coming out soon. I hope someone will find them as helpful as others have found all the ones I've written on crps so far. There's so much to write about so I'll have topics for a long time yet! lol The next couple coming is crps and weight loss, then a physical therapy series.

Hugs,

Karen

Quote:

Originally Posted by loretta (Post 536603)
Thanks you Karen for the excellent article you wrote. You wrote it in such an easily understood manner. I have a pychiatrist and he has excplained to me about the limbic system and the autonomic system. It helps to know why we have certain symptoms. Like the autonomic system is the organs in our body that are involuntary, like the heart,lungs, kidneys,That's why the sweating, circulation problems, temperature changes, And why are blood pressure goes high because of the sympathetic nervous system and then low because of the para sympathetic nervous system. As I have passed out because of low blood pressure, I'm careful not to bend over too long when washing my hair, etc.
Thank you again for the article. I always enjoy your posts. Your friend, loretta


hope4thebest 07-12-2009 11:43 PM

Hi Nancy,
Sometimes I don't even recognize myself any more...with my mobility limitations and other changes, I have lost the sense of who I am...and I greatly miss who I used to be...and I cry and lament the things I can no longer do (hike, stroll, be-bop around town, etc.)

But I must agree with fmichael about how helpful, insightful and psyche-saving the Shinzen Young C.D.s are. (particularly Break Through Pain and his book by the same title) When the burn pain is really bad and the nights are endless, I will listen to his C.D. as I try and fall asleep..he reviews how to cope with pain in a very humane and understanding way...
I have also found meditating to be a great help in retrieving balance and gaining some peace of mind and body....and finding myself again despite all the changes.
Take good care, Nancy,
Hope4theBest

loretta 07-13-2009 12:10 AM

Dear Sandy,
I am so very sorry you are going through this. I happen to have had shoulder complications,frozen shoulder, following breast surgery,benign. It took 100 physical therapy sessions to get range of motion back. I also had massage therapy just prior to the pt. Tho painful, it was good to go thru both. I also have severe headaches. I also have trigeminal nerve disorder. I don't have the breeze pain like so many. I think it was because of the physical therapy and using a tens unit. I injured my hand and during therapy, they also did desensitzation. I also did it everyday at home. I took several
tupperware bowls. I put cotton balls in one, coffee grounds in another, rice, beans, sand,
just several different textures and run my hands, fingers, and feet,toes, through them.
I know how bad the depression can get. It's been 13 years for me, and I still cry. It's a terrible thing to have ones health ripped out of their life. There is a wonderful book called You can't Afford The Luxury of a Negative Thought by Peter McWilliams. It coms in Hardback and paper back.
Michael J Fox just wrote a book called"Always Looking Up" It's about his struggle when he got parkinsons.
When my parents died, I did a couple of years of counseling and it really helped. I've been see a pyschiatrist/neurologist,pharmacologist. He manages my pain, and is so compassionate and helpfulin my struggles and adjusting to this life changing condition. I use a lot of different things for distraction. epson salt bathes, scented candles, meditation, prayer, exercise, stretching, swimming, comedy movies, my favorite music, keeping in touch with lifelong friends. Journeling is a wonderful aid in releasing painful feelings and loss we have. Writing down your feelings, can be a huge help in figuring out what is bothering us and releasing emotions. One of my meds is an anti-anxiety med called lorazepam 2mgx3 times a day. My Dr. changed my sleep aid and cut my anxiety med in half. Ambien CR wasn't working at all. I wouldn't get to sleep till 5-6 in the a.m.
and then sleep till the afternoon. The new med i sleep from 10-11 till 8-9 a.m. Sleep is imperative to cope with RSD. I was crying a lot, but as I adjusted more to this, it got better. I had been on two double dosed anti-depressants before changing to the one-cymbalta.
Have you ever had desensitzation sessions? Maybe you Dr. will order some pt with the desensitizing. I did have that and it was miserable.
Do you belong to a local support group? You can go on RSDSA and put in your zip code and they will give you a name and phone number to contact a person for time and location closest to you.
Please know we care and take care of yourself, loretta

Breezy55 07-13-2009 10:34 AM

Rsd and Your "Emotional State"
 
:circlelove:How could RSD not make us emotional and not change our lives. I always think about the way I was before I got this ugly and crul dieases. I was always on the go doing my nursing work,hiking,camping,downhill sking.(sp?) Anything that had to do with the outdoors! Now I am on SSDI and I do not like it. Sometimes without thinking some of my very close friends say (well some of us have to work!) It makes me so made. After I had worked for over 25 years as a nurse. How do they think I feel? Like I wanted to get RSD,ya right. Yes I do cry, then I do try to think about the people that have worse situations then I do. I do have big time problems trying to fall asleep! I have been to a sleep lab where I spent the whole night there,just to find out I have what is called (sleep misperception state) Basically it is when you think you are not sleeping and you really are more than you think you are. However I am only sleeping only 4-maybe 5 hours a night.The pain wakes me up most of the time,or my emotional state. Love To All By the way this was a great thread! Breezy55 :circlelove:

daniella 07-13-2009 11:55 AM

I have been dealing with this for 2.5 years and before my rsd I had severe depression/anxiety. I had seen a psych on and off for eyars but when got dx with this I quit as I wanted to just work with pain control. Anyhow as the years past and my pain level plus more health issues happened I became an anxious,depressed,almost like monster mess. After a very big push from my family I went back to a psych and on meds for anxiety/depression etc 4 months ago. I am so glad I did. Though I still have high pain my outlook and coping is still better. Even people in my life have made comments. I am more rational and through the bad days which I have both mental and physcial I can now remain more hopeful still. I think a combo approach with a pain doc and a psych works well. Hang in there

Jimking 07-13-2009 02:02 PM

Quote:

Originally Posted by daniella (Post 536925)
I have been dealing with this for 2.5 years and before my rsd I had severe depression/anxiety. I had seen a psych on and off for eyars but when got dx with this I quit as I wanted to just work with pain control. Anyhow as the years past and my pain level plus more health issues happened I became an anxious,depressed,almost like monster mess. After a very big push from my family I went back to a psych and on meds for anxiety/depression etc 4 months ago. I am so glad I did. Though I still have high pain my outlook and coping is still better. Even people in my life have made comments. I am more rational and through the bad days which I have both mental and physcial I can now remain more hopeful still. I think a combo approach with a pain doc and a psych works well. Hang in there

This is one area I feel I've failed to help my wife who has RSD. In her early days of this disease she was under no pain control which lasted around 4 years. She was falling apart and became very paranoid. Now she is much better in the pain department but still has several days of depression. She's sad and only talks to me and her doctors. Only when I insist on visiting folks that she will venture out. We used to be a very social couple. I've suggested and her doctors have suggested that she should talk to someone that can help her in dealing with her depression but she refuses. :(

Imahotep 07-13-2009 11:42 PM

Quote:

Originally Posted by Breezy55 (Post 536883)
:circlelove:How could RSD not make us emotional and not change our lives. I always think about the way I was before I got this ugly and crul dieases. I was always on the go doing my nursing work,hiking,camping,downhill sking.(sp?) Anything that had to do with the outdoors! Now I am on SSDI and I do not like it. Sometimes without thinking some of my very close friends say (well some of us have to work!) It makes me so made. After I had worked for over 25 years as a nurse. How do they think I feel? Like I wanted to get RSD,ya right. Yes I do cry, then I do try to think about the people that have worse situations then I do. I do have big time problems trying to fall asleep! I have been to a sleep lab where I spent the whole night there,just to find out I have what is called (sleep misperception state) Basically it is when you think you are not sleeping and you really are more than you think you are. However I am only sleeping only 4-maybe 5 hours a night.The pain wakes me up most of the time,or my emotional state. Love To All By the way this was a great thread! Breezy55 :circlelove:

At the risk of being a downer;

I mostly go from one negative emotion to another. These negative emotions are closely correlated with the pain but some also come when pain is low or absent altogether. When I feel the pain before the negativity I'm depressed and when I feel the negativity before the pain I feel guilty like it's all my fault. This is an embarrassing condition and I'm always feeling guilty about not working or not beimng able to do much (which is the leading cause of depression).

Anti-depressants give me all sorts of trouble but I don't think I could take them even if they didn't because they just paint a fake smile on my face and make me feel worse. Lexapro is a little better but I don't tolerate it well. When I can suppress the pain and the depression sometimes the paranoia will flare up. This is really just another type of pain; a sort of mental anguish.

I need to keep busy but it has to be something that doesn't require rapt attention or the pain will sneak up on me like lion. Of course physical activity is pretty limited. A little bit of overdoing it will cause a two or three day excursion.

It's been especially tough in the evenings lately because of extreme boredom.

Jimking 07-14-2009 08:24 AM

Quote:

Originally Posted by Imahotep (Post 537191)
At the risk of being a downer;

I mostly go from one negative emotion to another. These negative emotions are closely correlated with the pain but some also come when pain is low or absent altogether. When I feel the pain before the negativity I'm depressed and when I feel the negativity before the pain I feel guilty like it's all my fault. This is an embarrassing condition and I'm always feeling guilty about not working or not beimng able to do much (which is the leading cause of depression).

Anti-depressants give me all sorts of trouble but I don't think I could take them even if they didn't because they just paint a fake smile on my face and make me feel worse. Lexapro is a little better but I don't tolerate it well. When I can suppress the pain and the depression sometimes the paranoia will flare up. This is really just another type of pain; a sort of mental anguish.

I need to keep busy but it has to be something that doesn't require rapt attention or the pain will sneak up on me like lion. Of course physical activity is pretty limited. A little bit of overdoing it will cause a two or three day excursion.

It's been especially tough in the evenings lately because of extreme boredom.

This is exactly how my wife explains how she feels, exactly (she has RSD). She thanks me all the time for taking her to the doctors or do major repairs and upkeep around the house etc. I tell her to stop thanking me, I'm your husband and will do anything to help you, because I want to, it's our home, you have things you can do and those things that I can do and that's that. I feel I don't express myself enough to get thru to her that I'm very serious, I will not let her fall. Her guilt is enormous, she worked her whole life and feels that she is not contributing, but she is very much so.

CRPSbe 07-14-2009 10:24 AM

Quote:

Originally Posted by Jimking (Post 537282)
I tell her to stop thanking me, I'm your husband and will do anything to help you, because I want to, it's our home, you have things you can do and those things that I can do and that's that. I feel I don't express myself enough to get thru to her that I'm very serious, I will not let her fall.

It's great to hear that you have that kind of commitment for your wife. You don't see that kind of dedication much anymore nor do you see the level of comprehension for someone with RSD as the kind you have for your wife.

She's very lucky to have you care for her on a daily basis.

nancyinLA 07-14-2009 10:02 PM

thks 2 all of u 4 replies! it's so good 2 talk 2 "people in my own shoes"! not stayin' up late tonite.... will see my PM dr & psycholog. tomorrow..... hope everyone is feeling better!
hugs

daniella 07-15-2009 08:50 AM

Jimking you are not failing your wife. I am sure you are her hope and safety. I have that in my mom and it is a great gift. It took me awhile to say I would go to a psych. My mom pushed many times and I would not. I think I thought if the docs would just fix my physical health then my mental would be better. Now this is true but was not happening and how I was dealing with my physical health was not in a good manner. I think I remember you saying how your wife does not like to open up or come here and write but really if she would feel comfortable PM me I am here. I think the more one isolates and makes their world smaller the harder it is to get out of it. I have been trying to push myself to meet new people without conditions like this and let me tell you the fear/anxiety does set in but I know I need to try to push through. Also since the RSD limits ones ability it is important I think on the better days to fill them with as much "normal" as possible so that when the crud days come it does not take such a mental toll.

nancyinLA 07-15-2009 03:47 PM

Emotional State
 
Quote:

Originally Posted by hope4thebest (Post 536727)
Hi Nancy,
Sometimes I don't even recognize myself any more...with my mobility limitations and other changes, I have lost the sense of who I am...and I greatly miss who I used to be...and I cry and lament the things I can no longer do (hike, stroll, be-bop around town, etc.)

But I must agree with fmichael about how helpful, insightful and psyche-saving the Shinzen Young C.D.s are. (particularly Break Through Pain and his book by the same title) When the burn pain is really bad and the nights are endless, I will listen to his C.D. as I try and fall asleep..he reviews how to cope with pain in a very humane and understanding way...
I have also found meditating to be a great help in retrieving balance and gaining some peace of mind and body....and finding myself again despite all the changes.
Take good care, Nancy,
Hope4theBest

ur entire 1st parag. is me - this whole 1st yr! i've lost myself!! no longer work.... can't stand crowds any longer.... & i was an outgoing person! seeing psychologist, thank goodness! and we have a good God!
u take care!:)

loretta 07-16-2009 02:14 AM

Hi Nancy and Welcome,
Besides seeing my psychiatrist once a month, the last 5 years, I'm taking a lot of vitamins anti-oxidants etc. I've seen a female Dr. that does bio=identical hormones and does all the tests. I'm 61 I have full body 13 years. I have spells of crying still, it's rough to loose your health. I use meditation, prayer, reading, music, keeping in touch with friends, scented candles, hand and feet waxing, epson salt baths, essential oils, massage therapy, swimming keeps me mobile and feels good. visualization, bio-feedback,
Basically any kind of distraction, my soft furry cat, I'm grateful for being where I am, my health seems to be getting better, not worse. I have a brilliant Dr. I going to try hyper baric oxygen chamber in his new clinic.
Before you settle with WC you might talk to others that have gotten lifetime medical care, and put in certain treatments that are not normally covered by insurance, but work really well for RSD patients. Take care, loretta

NJsteve 07-19-2009 03:07 PM

I am really bad today. The bill collectors call incessantly from 8 am on. Each call reminds me of my RSD, and the resultant financial ruin. Sometimes I think it's a wonder I don't drink myself silly every day.

hope4thebest 07-20-2009 01:03 AM

Hi NJSteve,
I am not 100% sure about this, but under the Fair Debt Collection Practices Act, you can write what is called a "cease and desist letter" to collection agencies and tell them in writng to stop calling you. This is your right as a consumer. I think the lender has to have turned your account over to a collection agency...so you would write the letter to the collection agency.

You have valid justification as you have a medical condition that is being aggravated by the harrassment. You don't even have to share that info withthem..you just need to request them to stop!!!

Upon receipt of the letter, I believe the collection agency must halt their communication with you.

I hope someone on the boards may have more information on this, but it worth looking in to...The last thing you need is to be harrassed!

Take good care...
Hope4thebest

daniella 07-20-2009 06:12 AM

I agree that you should call and explain your situation and how this impacts your health. Have you discussed that due to health issues you are not able to pay or have you not explained this to them? I just ask cause that alone may stop them from calling or if you could even set up any type of payment even like 10 a month. I don't know if that is possible. I know how life things can add to this and really bring on the mental and physical pain. Stay strong and keeping take care of you. There is only so much one can do.

sue k 07-20-2009 03:43 PM

This is so hard for me to write. As i read all of your posts, its me. I've had rsd for 10 yrs now and I can't stand myself. I think about how I used to cook holiday dinners, make homemade cookies for my kids. I always said when I had grandkids I would do the same just like my grandmother. Now I'am luckey if I can make supper. I try to hide the crying and anger. Always a ''HAPPY FACE'' but its a lie. My husband is good to me, but he won't talk about the rsd and how I feel. I know its because he is so afraid of what may come next. I feel so bad for all of you. It makes me even sadder to know other people are facing this monster.


Sue K

NJsteve 07-20-2009 04:14 PM

It's been roughly 15 months since I requested a SSDI hearing. My lawyers office suggested perhaps penning a letter explaining my financial situation in an efffort to expedite the hearing. It can't hurt to try.

sue k 07-20-2009 04:50 PM

Njsteve,
the best way to get help is go to your congressman or women. When i applied for ssd i got right away with there help.

Sue k

NJsteve 07-22-2009 01:20 PM

I sent an email to my congressman detailing my situation and asking for help. We shall see what happens.

nancyinLA 07-26-2009 10:01 PM

Quote:

Originally Posted by mrsD (Post 536463)
Some people react to high folate amounts with emotional lability.

Deplin has a pretty high dose per tablet. 7.5mg.
Also high dose folate may severely mask low B12 levels.

I'd get a B12 serum level done...if it is below 500 I'd get B12 to go along with that folate. This is very important, because if you are low in B12 you can sustain neuro damage. Did your doctor test your B12 levels? Do you know what they were?

well, cannot take Deplin any longer - took it 12 days & i began having seizures..... interacts w/my seizure meds! so.... back 2 10mg Lexapro and was prescribed Ativan 4 "impending" seizures.....:)

nancyinLA 07-27-2009 08:40 PM

Quote:

Originally Posted by sue k (Post 540190)
This is so hard for me to write. As i read all of your posts, its me. I've had rsd for 10 yrs now and I can't stand myself. I think about how I used to cook holiday dinners, make homemade cookies for my kids. I always said when I had grandkids I would do the same just like my grandmother. Now I'am luckey if I can make supper. I try to hide the crying and anger. Always a ''HAPPY FACE'' but its a lie. My husband is good to me, but he won't talk about the rsd and how I feel. I know its because he is so afraid of what may come next. I feel so bad for all of you. It makes me even sadder to know other people are facing this monster.


Sue K

so sorry 4 ur pain...... i know how u feel. have 3 grands! i'm now a no-cook Nana - can't lift, stand long, etc. i, too, have a wonderful hubby, but we do talk, even if i cry! this site is a life-saver. thks 2 all of u!! U hang in there! prayers 4 all......;)

nancyinLA 07-27-2009 08:42 PM

Quote:

Originally Posted by loretta (Post 538268)
Hi Nancy and Welcome,
Besides seeing my psychiatrist once a month, the last 5 years, I'm taking a lot of vitamins anti-oxidants etc. I've seen a female Dr. that does bio=identical hormones and does all the tests. I'm 61 I have full body 13 years. I have spells of crying still, it's rough to loose your health. I use meditation, prayer, reading, music, keeping in touch with friends, scented candles, hand and feet waxing, epson salt baths, essential oils, massage therapy, swimming keeps me mobile and feels good. visualization, bio-feedback,
Basically any kind of distraction, my soft furry cat, I'm grateful for being where I am, my health seems to be getting better, not worse. I have a brilliant Dr. I going to try hyper baric oxygen chamber in his new clinic.
Before you settle with WC you might talk to others that have gotten lifetime medical care, and put in certain treatments that are not normally covered by insurance, but work really well for RSD patients. Take care, loretta

how do i find out about my state offering lifetime medical care? thks!:)

daniella 07-28-2009 12:04 PM

I am not sure about this type of thing Nancy but I would think if you ask your doctor they may be able to give you direction. I would think every state is different as well. I have never heard of lifetime care. Loretta do you have this for rsd? Wait is this the name of the coverage or do you mean life time. Sorry clueless? Just thought with rsd there could be a time where you would be able to work etc.

hope4thebest 07-29-2009 01:53 AM

Hi Nancy,
I am in California and I believe with a WC case you can have life-time medical care once the case settles. You might consider calling a WC attorney for a phone consultation..
But it is best to secure a WC attorney to work with you and to protect you...
I wish my accident had never happened, but since it did, I wish I didn't have to deal with Worker's Comp...I have to beg for authorizations...
Thus far, they have been somewhat reasonable....but it is a battle...

Take care,
hope4thebest


All times are GMT -5. The time now is 12:33 AM.

Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.