I agree hubby, those situations are what causes people to overdentify with illness. We have to live it to prove it. They need to help us live WITH and AROUND it!

Hi Mommyjen,

I don't understand what "causes people to overidentify with illness" means, could you explain, please?

All the best.

Hey,

This is hard one.

Mommy Jen - I can see to a point where you are coming from. However, I don't feel you phrased it in an appropriate manner. If what you mean is that it is important to try and keep living in the "real" world as well as the RSD world then I understand you. HOWEVER, I personally believe it is very important to have support from others who know what you are going through. I cannot think of a single person on this board who feels as you express. I have met one person like that with RSD (not from this board) and her symptoms were far more psychological than physiological - but it was shown by her and her doctors that she had conversion (went in to a mental unit and was walking within 2 days just through "normalisation" instead of physio etc.) However, this is very rare.

I developed RSD when I was 16. It is horrible to live with. I am now 21 and at uni. However, my "normal" mates have no idea what RSD is, they don't know what to say other than "poor you" which is something that I don't believe in. At the moment I am thinking of having a DBS inserted - most of my mates don't even understand what it would do - they are all for it if I want to do it, but they cannot understand the fear involved with messing with RSD and surgery. PERSONALLY I use this message board to enable me to be "more" normal. By talking to others with RSD I get the support I need and am then able to rarely talk about the RSD with my friends - who don't understand anyway (if this makes sense?). As you talk to people on here you get to know them and develop friendships - based on understanding and caring, empathy and support.

If I may be so bold as to ask, but if you believe support groups are so wrong.. then why are you here? If you were to look through the archives of this site then you would discover that some people get better, some people get worse, some stay the same... being a "support" group doesn't disable us, but enables us. Yes, we must live in reality, but at the same time, pain is all our realities and though you may have found amazing narcotic and social means to manage your pain some of us haven't.

Reality and the real world are important. But so is OUR DAILY REALITY of pain, suffering and disability. Several people on this site are house or bed bound through pain. I don't know if your RSD/ pain has ever been bad enough for this - but I know from experience that non RSDers don't understand this. They don't know what to say, though they want to visit they are scared they'll say the wrong thing, and after a while they stop visiting because they don't know what to say. you're the 17yr old sobbing in bed because you can't move and it hurts so much whilst they waited abit longer to visit because they still had hangovers from the night before.

If I woke up tomorrow and was pain free then I would do everything this RSD has stopped me doing. I would throw the wheelchair away, kiss goodbye to the carers and continue with my life. As would many people on this board. Is the relapse you are talking about a results of your own experiences? I have known people with RSD recover - and it is hard, there are psychological difficulties with adjusting to being more normal - generally to do with trying to pace themselves to AVOID the flares or deterioation in their condition - they discover that as they can run/ walk or whatever and want to do it all the time - then they are injured and back at square one.

I don't feel that many people on this site will appreciate this almost evangelical call to abandon other RSDers and pretend to be normal and let our disabilities work for us (that means I will soon be a circus freak - coming soon to a town near you - the amazing agonised pretzel queen) - it may have worked for you, it works to a small extent with me, but everyone on this site is an individual fighting their own battles. Have you considered that perhaps the thing that stops some people throwing themselves off bridges is that they are understood? That other people understand the agony, loneliness, fear etc of living with this? I am guessing from your message that you have never felt alone with this disease, never had questions and in fact must be an absoloutly amazing wonderwoman who can cope with all the emotional and physical aspects of this evil condition without help.

If so. Please share your magic ways with us so that we too can be cured, or at least cured to a point where we don't need support from others even if we still need wheelchairs and medication. If not, then please think in future about possible distress you may be causing people and that until you have walked/ rolled/ crawled/ been pushed a mile in another person's shoes you don't know what they are going through.

Frogga

My husband and I have talked about this often....He can not wait for the day he can go back to work. It has killed him to have to rely on me for financial support. He has always been a proud individual, one who provided for his family. He wants it back that way....He stays positive even tho this is our 2nd round with RSD (which was a major shock - we never thought it would occur from this surgery on his arm). He is preparing to go back to school, as he realizes the use of his arms could be limited, he will probably never go back to his previous work and he does not know how long this will last...We keep hoping for the same results as his leg - Where he is not completely pain free but is at least functional. He is not homebound, and even when it hurts like h*ll when he's having to take pain meds just to function, he still volunteers/works with the youth in the area in two different things, he attends church, goes shopping, and goes to our kids school functions, etc. RSD has not and will not completely take over his life.

He does not wallow around in self-pity - He works hard at his physical therapy, does his home exercises, is taking action to ensure the best results for his future, and remains as positive as possible. Some days it's tough - but he does it because thats the type of "pre-disposed personality or disposition" he has.....

I have such respect and compassion for your husband. He is trying to do the dance and believe me it will serve him so well. You sound like you walk right beside him. My husband is like that. I too miss what I wanted to do for work but I havae found a way to have my dream job! I sell antiques literally from my bed! LOL I started the whole thing with 100.00 and now I have a house full of interesting fun things and a prorfit each month. That kind of activity for my mind is crucial. RSD can;t get near my business. That is where I find the me who isfighting the pain and medications. I can be bright and funny and I can be successful every day. I pray your huband finds that place. Walk beside him and I can ever help in an way just ask.

Well, Look see what you started a five page merit badge to the reason why I belong to this group!

You were so backed up and supported and again I just want to say Welcome and Cheers. I still think after the five pages that my opinion has not changed... you should look for a new doctor.

It is not that he said that you were faking but there are doctors that are out there that skipped school the day changes were made to an acceptable treatment. There was a point where it was acceptable (I use this loosely for no other word comes to giant CRPS brain) for them to believe that RSD was a more mind issue than a body issue. Then the powers to be figured out that there was more to it as technology came around and proved it was physical. Those doctors did not follow up with their classes and schooling. They went to the darn beach or something.

Just my 2 worthless cents (hey guys, please do not jump on me for this post)

Gentle Hugs to all

Rain

Mommyjen,

1.You mentioned you have 2 young children. Who takes care of them while you are sitting in bed with your antiques? I seriouly can not even have my husband touch me. So obviously you had no problem being touched.

2. We are all different, it is not a matter of some people putting one foot in front of the other. I have done that it only caused me a 8 hour emergency surgery with neuro. and vascular entrapment. I am now not allowed to lift anything over 2 pounds.

3. Some people on this web site have heart and lung problems. Do you have any medical knowledge what that would do to them, even pushing themselves a little bit.

4. You really need to stop assuming things or even mention what is better or not for anybody.

5. I have had 2 very successful business at different times in my life, before RSD, one owning a Beauty Shop called Great Cuts. I was also very involved in Humanitarian work.

6. Their are several people that watch this site their in to rough of shape to even post.

7. We are a loving RSD site here. I hope you will give some thought to what you write because you could be hurting alot of people. Roz

Mommyjen--As I have said before, I think it is wonderful that you have undergone a process of accepting and coping with the severity of your illness. It is also to be respected that you are able to be creative and found your dream job by selling antiques from your bed. That is truly to be respected and admired!

But again, Mommyjen everyone is unique, and needs to find out ON THEIR OWN, IN THEIR OWN WAY what works or doesn't work for them. Sometimes, it is very difficult if one "perceives" that another is TELLING them that they are not "open" to other possiblities in order to cope with RSD.

Communicating over the web effectively is very difficult, for one cannot make eye-contact, observe body language, or hear intonations if the voice, which is critical with communicating effectively. Therefore , the CHOICE of words, on a Forum such as this, and HOW they are presented is very important.

For instance, when you use words and phrases like "that is your spin with your comrades in arms" or "that is his dance..and you are going along with it " , etc., this evokes a "FEELING "or that could easily be PERCEIVED as a negative condemnation of the WAY that someone is learning to adapt so that their life is more positive and fulfilling.

Could it be, Mommyjen,that because YOU seemingly have found a way to deal in a positive manner with your RDS, that perhaps you feel that OTHERS who have not yet acheived this, are somehow INFERIOR to you in some way?

Or, could it be, Mommyjen, that in SPITE of your success with finding an alternate form of work, are raising children, and trying to maintain a family, etc. that DEEP DOWN INSIDE, you still resent the way doctors and others have treated YOU; you resent the fact that you STILL have RSD despite desperately flying around the country to therapists and doctors for approriate treatment; and despite ALL of this, you are still, unfortunately, basically "bed-ridden" and struggling to find a more positive way to overcome this??

It is my feeling that because you are posting on this Forum, and have so very graciously and BRAVELY shared your story with us, Moomyjen, that you are REACHING OUT to people who TRULY UNDERSTAND THE HELL of RSD, and would like to have "COMRADES" who can SUPPORT YOU. Perhaps you feel insecure about HOW to effectively communicate your fears and concerns, so you choose to more "assertive" and somewhat aggressive in your manner and approach. That is PERFECTLY understandable, should that be the case.

You have stated several times that because of your experience with RSD, that it has caused you to become quite "defensive". We ALL have "acted out" in this manner, at one point or another, but we have also learned to be more trusting and GENTLE when communicating with each other. It is also quite natural and to be expected that "disagreements" will arise. Sometimes, it can be "perceived" that a different opinion or point of view is a "personal attack". Again, the choice of WORDS is usuallythe culprit, and through more thoughtful reconsideration of one's "approach", disagreements are resolved in a healthy manner.

And, perhaps , Moomyjen, it is difficult for YOU to BELIEVE that people who ALSO have RSD, and have found treatment sthat are successful, which have enabled them to become far more active than they once thought they COULD be, is somewhat threatening to you, because this is what you desire, but have not yet fully acheived. Yet, somehow, it appears from your words and responses, that you do not know how to reconcile this, so you hit a "nerve", in order to find a way to open the channels of communication with others.

Your choice of words are revealing, Mommyjen, as are the ways you choose to present them. We ALL need to be reminded from time to time and continue to learn to be more cognisant of how WORDS can affect people...and be more SENSITVE to the fragilities of others, physical OR emotional. No one is perfect, we all make mistakes, and that is just part of being HUMAN.

RSD is a VERY difficult Journey, as you know, Mommyjen. However, it offers EACH INDIVIDUAL an opportunity to grow and learn and find their OWN path, in the context of their OWN lives. It cannot be FORCED on them. At times, it appears from your words, as well intentioned as they are, that this is what you are attempting to do. Again, your words reflect that this is what OTHERS have done to YOU, by your own account. It is very uncomfortable to be placed in that position, even though unintentional.

I would like to be your friend, and perhaps others on this Forum would like that as well, Mommyjen, should you wish for us to be. It is only requested that you please RESPECT our INDIVIDUAL Journeys with RSD. In return, your Journey will be respected as well, and you you find immense support amongst an AMAZING group of interesting, diverse, and intelligent people!

In the Spirit of Respect, Sincerity and Friendship

Brokenwings

Hey mummy Jen ,

I agree with both Roz and Broken Wings.

You have bought some things which have to be thought about individually by the group members. Acceptance runs through something similar to a grief cycle. You have obviosuly worked through this, and are now at the point of questionning yourself and your attitudes towards doctors. I admire you for that and for dealing with the hard questions I assume that you are going to pose. To a degree this is a point that I have reached - which is why I am NORMAL but I'm just an RSD crip. Together.

As BW said the way things are said on here does indicate meaning, the same words can be arranged to either be positive or negative, to support someone, or to make them feel inadequate or pathetic. I am certain that getting RSD at 3 cannot have been easy and must have been horrible to cope with, I find it hard enough to deal with mine and I have only had it since teens.

However, many people have not reached the stage in the grief cycle that you have, they are still trying to get their old life back. which is a stage that must be gone through before acceptance and a sort of peace arrives mentally where you aren't HAPPY to have RSD, but you understand you have it, there is very little you can do to change the situation magically, and that life must continue. Many people on this forum have reached this point, and many more will not reach this point for a while longer and are not at a stage where any of the things you have suggested will help them, or will be positive for them.

What does a diagnosis matter? you say that you are on heavy narcotic therapy. Well, if the RSD is treated as something psychological then I fear that you wouldn't have your narcotics, instead you'd be given some diazipam and some haliperidol and told to come to therapy every week or go into a mental institution. Whereas RSD therapy involves (as you know) physio, pain medication, generally some for of psychological support (for dealing with this level of pain and to help people adapt and live with it and not jump off bridges). As you know there is a very large difference between these two treatments. Also, I guess that you have searched for a cure, made RSD your "job" almost - flying from place to place to try and find a cure, or a treatment, to discuss with therapists and specialists - this is something that I find, anyway, incredibly draining and incredibly RSD focused.

If you search these archives you can see the cookery thread we created (Liz? I think??), a hobby thread etc - the aim of this is to help people take up a hobby (an IHH thread), or think about cooking (even if they can't physically), or support them to develop outside interests - (my thread) in a way that optimises people mentally, by showing them they can manage things, whilst limiting the physical consequences. (there are more threads, just those were off the top of my head).

Whatever people say, an email is more than words, it automatically infers tone, it infers belittlement of others experiences, it suggests and it hurts some people. If you feel that you want to talk about motivation etc then I am perfectly happy to discuss it over PM - however, others are not at a stage when this is appropriate. If you are looking for support here then agressiveness will not help.

hope you are having a good day.

Frogga

Hi KateLynne and others who posted here,

First, while I don't know anything about his anatomy, the urethra is generally larger than a pin, so "pindick" is probably not the right word to describe him.

He is, however, a male, and we males usually have to work at overcoming the belief that our penis somehow makes us superior to women. As a physician, I'm guessing he probably assumes that the fact that more women than men suffer from this disease means it is probably psychosomatic (it is no coincidence that "hysterectomy" and "hysteria" sound much the same; it was not all that long ago that doctors believed that removing the ovaries, the source of many hormones, made women saner); beliefs are in the brain, which is in the head. I suggest that dickhead is a more appropriate classification.

Now, as to your RSD: is your skin in affected areas blue to purplish in color? Does 60 degrees feel like frostbite? Cyanosis is almost as common as burning pain and allodynia in this disease. How does he explain this in the context of a pain syndrome?

Like most physicians, he certainly knows that glove-effect pain, whether of just the hand or foot or an entire limb, is most likely either malingering or evidence of a psychosomatic disorder. Guessing again, he probably thinks we are probably somehow able to affect the sympathetic nervous system; causing vasoconstriction that would explain the cyanosis, but a Doppler blood flow study would exclude SNS vasoconstriction.

You could try to challenge his distorted views, even try to educate him about the facts of RSD, but why bother? His mind is already made up, and you need to seek the treatment he refuses to provide. I agree with nearly everyone else who had posted here, dump the jerk and find a doc who believes you.

About cyanosis: what you actually see are thousands of microvascular systems very close to the skin. Blood is not circulating through them and the blood that is trapped has been depleted of oxygen. That is the only explanation for cyanosis. There are several reasons why blood isn't circulating; the most common being that you are dead. Sympathetic vasoconstriction and peripheral artery disease (atherosclerosis as a result of plaque buildup) but Doppler studies will exclude them). Late stage diabetes and Raynaud's disease are other explanations, but tests can exclude them too.

During my five year fight with workers comp I was seen by twelve doctors, nine of them diagnosed or confirmed RSD simply by looking at my purple foot. The tenth actually tested the difference in skin temp between my right and left foot before confirming it.

Of the other two, one had obviously never seen RSD; he suspected atherosclerosis and ordered the Doppler study. Number 12 was one of three work comp ordered IME's (individual malpractice experiences), and he claimed I was not only faking the RSD, but all of my other nerve damage symptoms, despite MRIs, a CT scan and EMG that objectively confirmed them. The work comp law judge, SSDI and private disability insurance ignored his report.

It is a damn shame that cyanosis is not listed among the diagnostic criteria for RSD, and every doctor who has written anything that includes diagnositic criteria is guilty of lying by omission. Cyanosis was commonly mentioned in the literature until the late 1940s, but fell into disuse after blood flow studies proved that SNS vasoconstriction was not present in RSD. This is the only neurological explanation for cyanosis, and once it was gone doctors just stopped talking about this important sign.

We often suffer from misdiagnoses such as malingering and psychosomatic disorders because cyanosis is not mentioned. We suffer because RSD experts won't talk about it, and they don't talk about it because they can't come up with a neurological explanation.

I don't believe the ten doctors who diagnosed or confirmed RSD simply by observing cyanosis are exceptions; that every physician familiar with this disease reaches the same conclusion. The reason they order other tests is that they know that mentioning cyanosis would complicate work comp and other insurance claims: it isn't listed in the diagnostic criteria so they must find other ways to confirm RSD.

As I said earlier, it is a damn shame that cyanosis isn't listed; if it was, your doctor might actually believe you and provide the limited treatment that could help you cope with this disease.

A NOTE TO MOMMYJEN: I suspect that your success in selling antiques is not enough to support your family. My wife and I (she is also disabled) survive on SSDI and private disability insurance, both of which would end if I tried to earn money in any way.

Before I became a social worker I took paralegal studies at a local university; I didn't graduate because I knew I could not carry all the law books necessary for almost any case from the shelves to a nearby table. This was before computers. So I didn't take the final in one of my classes and didn't graduate.

I think I could eventually earn a better living as a paralegal, even though I too am bed confined. I was very good at it, earning "As" in every class; but that would take time, meanwhile I would lose the income I rely upon the moment I earned my first paycheck.

I don't know whether you worked long enough to qualify for SSDI, but with a working husband I know you wouldn't meet the means test for SSI, so a part-time income wouldn't be a problem.

Using your experience as an example for those of us who survive on disability payments is, as my son loves to repeat, comparing apples with oranges. It doesn't work.

If I'm guilty of "piling on" in my reply to you, I can only say that every post of yours that I have read makes it appear that you feel morally superior to us or are being downright dishonest: I don't think anyone who reports they are bed confined can honestly claim to have learned how to cope with this disease any better than the rest of us...Vic