I was a 3 yr old with RSD so hell yes I was called liar and made to feel like I was hurting my family. I had doctor throw a pair of cutches at my feet and say : here you finally got what you want" . I have been through all that and more and that is why I say it is irrelevant what they call it. I have it and I don't the wast time and energy finding someone who will tell me what I want to hear. You hear it because you have it. Listen to every docs opinion because usually there is at least one bit of truth among the ruins that can help build a better understanding and keep us open to getting well. I don't disagree that this a loopersonal journey but if we want to come out on the other end we may want ot listen to other people who have found some peace. If we aren't willing to look at the notion of maybe being over identified with our illnesss then that is a glaring light saying maybe we need to. There is no avenue I wouldn't explore to be rid of this. I did the all in your head therapy gladly hoping maybe they were right. I never got better but a got great coping skills. I am surprised how people have decided whom they believe I am singling out. I am singling out no one. CHronic Illness in a collective experience. If you feel picked on then chances are you are relating to something I wrote and don't want to look at it. I say look hard at it until you can soften to yourself and and not feel guilt or ashamed or persecuted......

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

True Vic, very true.

I also understand about the SSDI (disability payments). I will have to be earning over £40,000 a year at least to even pay for my care (well, the care alone is about £25, 000 a year - if I worked I lose benefigts (£12,000 a year).. so before you know it that leaves you £3,000 to live off. not good. I hope that once I have finished my degree I can work and can work well enough for it to be worth my while to. I WANT to work, it's the disability system which charges me for being ill that doesn't!

It's a no win - I have no money behind me, I have no investments, I have an expensive wheelchair, but one cannot call that an asset.

Many of us caught in the bind of if we do ANY paid work then we will lose out to such a degree. It doesn't matter that I will have to have carers to go to work, and I will still need 24 hour care. If I work. I'm cured.

GRRRr

hope things are ok for you.

Love

Frogga xxxxx

Hi Vicc- What an EXCELLENT explanation of the cyanosis factor! That truly does seem to be the "missing link" in so many cases. ENJOYED your posts thoroughly! Absolutely outstanding, and creates the possibility of raising this issue of cyanosis with Doctors who are OPEN to it!

Frogga- What can I say? You are eloquent beyond your tender years, and an INSPIRATION!!!

On another note, I would like to give Mommajen a chance to respond to our posts, so that we can have a better opportunity to understand her. Having RSD as a very young child must have been EXTREMELY diffficult--I am sure we all remember just how CRUEL kids can be to other kids that they consider "different", have been subjected to"pindick docs" (LOVE that term) during our unfortunate experience with RSD, and of course, MANY have been told "it is all in our heads"...We ALL have MUCH more in COMMON with each other than we have DIFFERENCES, and perhaps we will find that to be the case with Mommyjen as well.

Most Sincerly,

Brokenwings

P.S. Hey Vicc--can a Uretha "atrophy"?! It would be a shame to exclude a "pindick diagnosis" of a Doc due to lack of SCIENTIFIC evidence!! (Or a repulsion of examining the "body part" in question...)

I really haven't told you the absolute worst thing my Dr told me... he said that someone he knew who was motivated to get better was better in 3 weeks!! And he said that anyone who does not follow his treatment plan won't get better! Does he think a lot about himself or what?? Now if I don't get better he can just blame it on me not following his "plan" and getting psychological test and all that...

Thanks for all the positive input and advice here! I appreciate those who responded to my original post about getting a new Dr..

I am DEFINATELY going to get a new Dr.!! I just have to get my medical records from my Dr now faxed to the new Dr I want to try! Does anyone know how that is done? Can you call your Dr's office and ask the receptionist? TIA.


Frogga, I really have appreciated your posts in this thread, thank you so much!!

Diamond Lil, that is SO true about what Drs. used to say to mothers who had a child with autism. That is plain HORRIBLE and I feel so bad for those who were told that. Thanks for adding that to this thread. I just think... "maybe one day we will look back and see how many people with RSD were told they had a psychological condition and they really didn't and now we know the REAL truth!".... maybe one day it will all be set in stone what RSD REALLY IS, how it STARTS and how to END it!! I REALLY HOPE SO!!!!!!!!! That is a dream come TRUE for all of us here and now with RSD!

Hope everyone is feeling well today.

Hi Katleynn! Glad to hear that you are getting rid of that "Doctor"!!

Getting your medical records released to either you or a new doc will require written authorization. The receptionist should fax you an Authorization to Release Medical Records pursuant to HIPPA (new laws re confidentiality). Once you have signed the form and indicated the Doctor that you want the records sent to, and fax it back, then the Docs office is required to comply.

Depending how voluminous your records are, it may take a while! And, the medical records person might not want to fax a lot of records, and might want to mail them to you. Sometimes, it is helpful to indicate an "urgency" to recieve the records, by telling them that your appt. is coming up pretty qiock, and you need those records ASAP in ADVANCE of the appointment!

Hope this helps, and good luck with your new Doctor!!

Brokenwings