Is RSD the cause of not being able to
 

function like a human being?

I have had some bad days here lately. First due to my depression and I believe it's made worse by the Holidays, then pelvic pain and leg pain. I get one place calmed down and another starts.

My daughter is my caregiver. She helps me with housework, runs to get my meds and groceries on her days here.

I feel like I donot function like a normal human being. I can't invite people over for a meal because I don't feel I can cook for them. I am a good cook, that's not the problem. I really don't know how to describe the problem. It's just that I don't feel capable of doing the things I use to do, even the simplelist things.

Some of my Drs. have described me as being different from normal people and I really don't know if it's the RSD or something else that I have. My PCP wanted me to go to a Dr. in California that he thinks is good to see if they could figure things out but money is a problem for me and just traveling is. He has also mentioned the Mayo Clinic but I haven't heard good about them from people around here that have went there. He thinks this Dr. would be best and I can't remember his name either right now.

I'm just wondering, how any of you feel about doing simple task. I'm not saying due to the pain but due to the mental.

Thanks for any replies,
Ada

A simple task is hard for any of us, its not just you. We all have those days. You still are normal, but RSD causes something in us that makes us break. WE cant stop it, YOU cant stop it, but I can help prevent it. So can many other people here. We know what your going through and you can turn to us if you need help. Personally I think if you can, you should go see that doctor, to see what, he/ she has to say. I could be worth it in the long run.

Best wishes and a merry christmas and happy holidays
-Jeremy-

Ada....
 

Ada... please let me say.. you are very much in the "norm" of RSD..we all feel that "helpless, lifeless", scared feeling.. Iam the bold one who said 3 yrs. ago..it won't change me.. Well I have changed becuase of it... I have had to succum to my 25 yr. job because of the pain and progression.. I have given in..but only to a point as I am not done with my galant fight..just changing my pace a bit.. RSD is a huge monster and please know we all share your feelings..inside and out!!! Merry Christmas, Ada and all of the best for a less painful 2010!!:grouphug:

Hi Ada,

This time of year is even more difficult for us when we cant do for others what we use to be able to do. Maybe you could have a simple get together with your friends. Have a tea luncheon.

Our friends here on NT are important but we need to keep contact with our friends in real time. Somedays are harder than others. We have to make ourselves stay active and not just allow our RSD to take over parts of life we can control. Talk to your doctor that prescribes your depression medication maybe it needs adjusted.

If you are able volunteer a few hours a week. I do at a pre school with my sister. Its just 2 1/2 hours a week. The kids make me laugh and I feel a since of helping and doing for others.

I think so many times as suffers of RSD we allow it to have complete control of our life. The pain is so bad that some days I get a book and just sit on the couch and read for the day. We MUST not let it control the things in our life we can control.

Talk with your doctor about the depression issues and ask if your meds can be adjusted.
Everything about you is normal. We all deal with the changes in our life from our health differently. Don't let RSD define you as a person. We are normal we just have to adjust how and what we do because of our pain.

God doesn't make junk the book of Psalm tells us we are wonderfully made and we are his master piece. Trust in the Lord and he will give you peace.

Merry Christmas,
Sherrie

Hi Ada, you sound like what all of us have felt at one time or another, or go back and forth, depending on our pain. It is a huge mental adjustment. I started coming out of my deep depression in year 10 when I found a good psychiatrist, that also is a neurologist and pharmacologist. He has adjusted my meds and made the world of differerence. I'm still adjusting meds. I also had 2 plus years of therapy when my parents died over35 years ago. What kind of Dr. is it in California-Have you seen a therapist? the right one can be very effective. I've had to interview different ones first. This Dr. happens to be very compassionate and smart.
The right Dr. along these lines can be a life changer. My personal opinion is that it is usually is a psychologist rather than a psychiatrist. But, because of my Drs. 3 degrees and his life experiences, he is perfect for me.
My best friend in Oregon is a counselor-alcohol and drug. We are extremely close, they visit everyother year. Her husband is in nuclear medicine-the kind of test that confirmed my RSD when I was diagnosed. I wasn't diagnosed for 4 years and then misdiagnosed. I flew from Phoenix to Oregon to a orthopedic hand surgeon and he knew in 1 minute what it was and was confirmed by test. That's also were I went thru therapy with the death of my parents. I read about 50 books and was in therapy 1-2-3 times a week forr 2 plus years and lots of seminars, like grief seminars, etc. So what kind of Dr. in California? Take care, loretta

Can relate
 

Hi Ada,

As the others sad, you are 'normal' as far as living with RSD is concerned. Holidays may be especially difficult, even on a healthy bodied person. Memories of what you used to be able to do this time of year haunt you, and the social commercialism of it all makes you feel totally inept. It, too, shall pass. The ebbs and flows of good moments and bad will always be. My husband just snapped at me for yelling at my young boys ( almost 3 and 5 years old), but trying to care for them day in and day out is sooo difficult, I can't help but yell once in awhile. Perhaps, tomorrow will be a better day. We can only hope......

:grouphug: Vanna

It's usually so hard to know what exactly is wrong.

For me I think it's usually some type of fear. I'm afraid of the symptoms which strike with no warning. I'm afraid I'll get stuck in traffic. I'm afraid of getting hurt or what will happen in the future.

There's so much pain and so much worry in addition to the obvious disabilities. I never worried about anything before and now everything is a big concern. Probably depression is a factor as well as it, too, just causes the wind to fall from one's sails. There's a fear and sense of "what's the use" everytime a big project is contemplated.

I do fight it and do as much as possible. There's got to be some way to lick this thing and I'm not ready to give up yet (this particular minute anyway).

A year ago I didn't feel human at all. When I have a bad flare it's the same way..I have gone 10 days with minimal pain when WHAM! it hit me like a ton of bricks this afternoon. Coming home from Christmas with the in laws I was in tears and I am sitting here typing to keep my mind off my leg. I am glad that we have this forum to relate our disorder/syndrome to a great bunch of friends. I don't know what I did without you all!:)

Hi everyone,
 

Thanks for the support and answers you gave me.

The day I wrote this was the day I had my car accident. I had just been out of it for a few days. It really wasn't depression, it's just another feeling I have at times that makes me not feel normal. I am on no pain meds nor depression meds. I take Mitformin and Nexium for my stomach. That's it. Med's and I don't mix.

Vanna, as you get to feeling better with the RSD you will not yell at the kids so much. I use to be really snappy with Bill and my Grandson's. I am much better with the boys now. They are older though. Your's are at that age where they don't quite understand things. We kept Dustin and Devin 2 to 3 nights a week from the time they were born. I was sick before they were born so boy was it hard to take care of them. Bill helped so much. I use to sat in a rocker and rock them and I was in so much pain that I couldn't really take care of them like I should have. It's good that you have your husband to help because it is very hard for us to do it alone.

I do worry about everything like you, Imahotep. My Dr. says I'm the worst about worrying about things. He says leave the worrying over the boys to Susan and Travis. It don't work for me though.

Now I have to get my old truck fixed up to drive. I have to find someone to drive me around till I get it done. I hate asking anyone for anything.

Life to me doesn't seem normal at times. I try to ajust to what is going on with things but it don't always work.

Thanks for the help on this.
Ada

Ada -

Sorry to getting in late here. No you are not alone in this. As set forth in The Natural History of Complex Regional Pain Syndrome, Schwartzman RJ, Erwin KL, Alexander GM, Clin J Pain 2009; 25:273-280, full text at http://www.rsds.org/2/library/articl...lexanderGM.pdf :

More than half of the patients in this study reported cognitive and memory difficulties. Deficits in information processing48 and short-term memory49 have been reported in patients afflicted with chronic pain. Chronic pain has also been shown to impair working memory50 and decision-making.51 The disruption of cognitive performance in chronic pain patients could result from a number of factors such as pain medications,50 stress,52 the engagement of the prefrontal cortex by chronic pain,51 and the fact that pain may act as a distractor resulting in impaired working memory.50 Pain alleviation in CRPS treated by ketamine coma has been shown to result in a significant improvement in attention and information processing.53 The quality of life and work history component of the questionnaire demonstrate the great social and employment disruption caused by refractory CRPS. [Emphasis added.]

Footnotes
48. Grigsby J, Rosenberg NL, Busenbark D. Chronic pain is associated with deficits in information processing. Percept Mot Skills. 1995;81:403–410.
49. Ling J, Campbell C, Heffernan TM, et al. Short-term prospective memory deficits in chronic back pain patients. Psychosom Med. 2007;69:144–148.
50. D_i_c_k* BD, Rashiq S. Disruption of attention and working memory traces in individuals with chronic pain. Anesth Analg. 2007;104:1223–1229.
51. Apkarian AV, Sosa Y, Krauss BR, et al. Chronic pain patients are impaired on an emotional decision-making task. Pain. 2004;108:129–136.
52. Patil PG, Apfelbaum JL, Zacny JP. Effects of a cold-water stressor on psychomotor and cognitive functioning in humans. Physiol Behav. 1995;58:1281–1286.
53. Koffler SP, Hampstead BM, Irani F, et al. The neurocognitive effects of 5 day anesthetic ketamine for the treatment of refractory complex regional pain syndrome. Arch Clin Neuropsychol. 2007;22:719–729.

*Don't you just love the Nannieware?

And as to my personal and ongoing experience, which may not be that different from your own, please look over the following excerpt from a post I just put up in debbiehub's thread http://neurotalk.psychcentral.com/thread111163.html:

I used a PubMed function looking for "related" articles, and after going through over a hundred listings, found nothing on the effect of CRPS on organs, I did find, among other articles dealing with blood flow in the extremities, one I didn't recall reading before, it is a deep and amazing article that should be required reading for anyone in the area, Pathologic alterations of cutaneous innervation and vasculature in affected limbs from patients with complex regional pain syndrome, Albrecht PH, Hines S, Eisenberg E, et al, Pain 2006;120:244-266 full text at http://www.rsds.org/2/library/articl..._PAIN%2006.pdf:

Abstract
Complex regional pain syndromes (CRPS, type I and type II) are devastating conditions that can occur following soft tissue (CRPS type I) or nerve (CRPS type II) injury. CRPS type I, also known as reflex sympathetic dystrophy, presents in patients lacking a well-defined nerve lesion, and has been questioned as to whether or not it is a true neuropathic condition with an organic basis. As described here, glabrous and hairy skin samples from the amputated upper and lower extremity from two CRPS type I diagnosed patients were processed for double-label immunofluorescence using a battery of antibodies directed against neural-related proteins and mediators of nociceptive sensory function. In CRPS affected skin, several neuropathologic alterations were detected, including: (1) the presence of numerous abnormal thin caliber NF-positive/MBP-negative axons innervating hair follicles; (2) a decrease in epidermal, sweat gland, and vascular innervation; (3) a loss of CGRP expression on remaining innervation to vasculature and sweat glands; (4) an inappropriate expression of NPY on innervation to superficial arterioles and sweat glands; and (5) a loss of vascular endothelial integrity and extraordinary vascular hypertrophy. The results are evidence of widespread cutaneous neuropathologic changes. Importantly, in these CRPS type I patients, the myriad of clinical symptoms observed had detectable neuropathologic correlates.

PMID: 16427199 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/sites/entrez

Not coincidently, I found the last article when I searched PubMed for "arteriole CRPS" and it was the ONLY article that came up. And the search occurred to me a couple of weeks after my neurologist advised me that if we were going to look for an organic cause of my striking loss of organizational abilities, spatial reasoning and the ability to calendar simple things in my head (all under the heading of executory functioning), on the one hand, and on significant and increasing memory issues, from not unusual word recall problems, to having to sneak a look at my check book to avoid transposing the 5 digits in my street address and having no memory of something I had read the day before, to literally the ability at times to form new memories, on the other hand. What he said was, if I wanted to focus specifically on he effect of CRPS induced vasoconstriction in the brain, we would have to look at the arterioles, the smallest blood vessel with any muscle tissue that could respond to nerve signaling. And that would require a brain CT angiogram. [Emphasis added.]

However, with a lot of nuclear studies and the like under my belt in the last few years, including a coronary CT angiogram, my internist is advising me that this is something I may want to give some reflection to jumping into. That said, if you are seriously concerned about the risk of specific organ damage secondary to CRPS, I would suggest you consider discussing with your physicians a CT angiogram of said organ(s), with specific emphasis on the arterioles; I would also show them Pathologic alterations of cutaneous innervation and vasculature in affected limbs from patients with complex regional pain syndrome, Albrecht PH, Hines S, Eisenberg E, et al.

That's about what I know. I'm sorry you are going through this, but it appears to be a widespread aspect of the disease process that doesn't get the attention it deserves.

Mike

Hi Ada,

I was at my parents' for a few days, so I am responding late to your posting.

What I hate most of all is the feeling of being overwhelmed by things that used to be so simple. I had several house parties to attend, my ordinary shopping, our household to decorate and organize, and then a long trip with a big 50th anniversary party for my parents to attend over the weekend. A few years ago it would have been a piece of cake, I have always excelled at organization and loved the holidays with my friends and family. I could handle it all no problem and do it well, too. My baking is usually the best!!

This year I HATED it. It was just too much with my RSD. My husband and daughter had to help me keep it all together. I got done what needed to get done, but it sucked - it was such a struggle and my head hurt so badly I often broke down in tears. I am so glad that Christmas is over and I can finally take it easy.

I thought maybe my organization disabilities and depression were due to the Fentanyl or the Oxycodone. Of course the timing of certain problems with WC didn't help things.

So Ada you are not alone in this...thanks Mike for the scientific stuff, appreciate it....

XOXOX Sandy

Hi Sandy,
 

You do get overwhelmed over things that should be simple but what I am learning to do is to simplify things.

I didn't do any baking this year for Christmas. The only decorating I did was the tree. I use to decorate all over the house and outside.

Travis did the cooking, I didn't even make macroni salad for him this time. I just couldn't get in the swing of Christmas. We forgot to even bake the pies for Christmas. We had them but we had all gotten full on cheeseballs and then dinner that we all forgot the desert.

We do need help in keeping it all together and pulling it together. We don't even have to get started doing things to get overwhelmed, we just think of it and we get overwhelmed.

Thanks Mike for the info you posted on the memory and cognitive issues.

Ada

That was the problem all along!! Not to mention that when I was using my arms to try to bake it was making my head hurt the next day.

And when I tried to explain how I felt to my mother she advised me to make a "list" - that it would help me keep track of things. Little does she know how that would how just served to put me completely over the deep end...

Your understanding is awesome! Hope your right side is settling down!

XOXOX Sandy

Hi,
 

I was looking at my Christmas tree and thinking about taking it down and it totally overwhelmed me. Just the thought of it. My Dr. said to wait until I am ready to do it. It might be up next year at this time. LOL

Now I know that overwhelmed is the perfect word for what goes on with people with RSD and trying to function like normal people.

I also want to declutter my home and that's overwhelming me. When I think of it, I look at things that Bill got me and can't part with them but yet I know I want to thin things out around here. I also have 2 storage sheds full and thinking I need to get rid of this stuff so if anything ever happens to me, the kids won't have to do it. I have seen several of my friends go through this lately and it's very hard on them to clean out a home of a loved one. That's what makes me think I want to get this done.

Sandy, I do make a list at times of things I need to do and mark them off as I get them done but that's for small things to do like shopping, making certain phone calls. The bigger time consuming things though seems impossible to do.

Ada