New leaf, new life!
 

I posted this in the Chronic pain forum as well, but wanted to let my friends here know as well!




So I have come to a couple conclusions. I NEED to stop dwelling on the negative, inundating, overwhelming things that have been pushing my stress level through the roof.And, to remember the strong competent woman I know I was/can be!! I NEED to focus on bettering my health, mind, life. Not only for myself but that so my daughter has a positive role model. I have decided I am not going to let CRPS rule my thoughts, and body. As much as possible anyways. And I DON'T need someone who is dragging me down with negative energy and adding complications to an already maxed out body and mind.


I still have a LOT of pain, but I am choosing to ignore it as best I can. Which easier since I have the Lidoderm patches. I see a new Doctor on Thursday and am going to discuss medicine options with the patches, something like the Amitriptyline, and a possibly some form of narcotic for when I have break through pain only. We'll see how that goes. I am going to be more ASSERTIVE in my needs/wants because I don't feel I should have to tolerate a ton of side effects! It is my body and my money that's paying them so they should work with me on that front, if I say I hate how it makes me feel. Having me be fatigued to the point of falling asleep anywhere anytime. Or tons of nausea and vomiting to the edge of distraction.

I am going to BETTER myself and go back to school. This will be tough but I have to do something different, so I can provide for my daughter on my own. I have an actual, obtainable goal in mind that won't take years and years but WILL make independence a realistic goal! I CAN do this I know there are many others, who have faced bigger challenges and still have major success. I will NOT depend on the help of a man/partner when I CAN do it on my own!

Yes I am tired of being in pain. I am tired of having people look at you and not see anything that "wrong", so I MUST be exaggerating. My CRPS has not made my skin bright red or blue I have some visible mottling and temp difference and a little swelling. That does not mean I don't hurt. If someone can't be there for me and just accept what I say, well then I guess I don't need them in my life anyways.

I saw a quote today that for some reason struck a chord with me

""You do NOT have a choice about other people's behavior. People are going to do what they do and there is nothing you can do about it at all - except choose what your own behavior will be. ""

It sounds like a "no brainer"for most people, but when you have an issue with chronic pain, or a similar life altering event, you can forget the basics when you get caught up in everything else. You want others to be a little empathetic or supportive. When all I need for support is myself! I can be the one who understands and I DON'T need a partner to get it! Even though it would be ideal in a strong healthy relationship, it isn't a necessity for me to be able to cope. And if said partner can't support me when I need it most? Well I guess we were really partners then.

So from here on out I am determined to be there for myself and my daughter first and foremost! I can count myself very lucky as well. My condition was caught early, mainly because I sought a second opinion. I can plausibly push this into remission. Or at the very least keep it from progressing/advancing. As much as I hurt I will still hurt no matter what I'm doing so I'm going to do something for ME. The will better MY life, and advance MY future. My whole life I have always thought others should come before myself. Husband,kids,work, a lot of the time self sacrificing to a very bad fault. WELL not anymore!! With the exception of my daughter I and coming FIRST, MY needs will be taken care of. And if I am called selfish, so be it. I've come to a point in my life where I MUST focus on myself.


Yes I will have limitations. Physically and Emotionally at times. I will still need to lean on people from time to time, but I need to draw strength from them. Not have them take what little I have left, then have them NOT help clean up the resulting mess. I don't know exactly how I will do it in my own, but I have faith in myself. If I can get the right combo of medicine and support from a medical team.....then I can do damn near ANYTHING I out my mind to!!! And it's about time I started!

:cool: :eek:

I guess I've just come to the conclusion that I don't need a MAN, to help me :holysheep:


And I know it will be difficult BUT I can do it. A very wise man once said "if we had only the faith of a mustard seed we could move mountains" Well maybe with enough resolve I can work past this pain, and condition and STILL better myself. And honestly with what I am contending with now maybe it's better I saw his true colors before we got married....

Now where can I find a good living room set for a reeeeally cheap price??? lol

good for you!
 

My rsd cost me my former marriage, and it turned out to be a great thing. RSD is hard enough without doubters in your life. My favorite quote is like yours..."The only thing you can control is your attitude". Good luck!
:)

Sounds like you had an emotional breakthrough. Good for you! A therapist is still a great option to have... I'm not an active patient, but I have been in the past, but still can make an appointment as needed.

Have you told your fiancée this yet???

While I applaud your idea of going to school--I went that route, may I suggest you at least wait until the fall at earliest... You need to concentrate on taking care of yourself and your daughter first and foremost. The "window" for best opportunity for remission is relatively short. School can be as stressful and demanding as a ft job.

Lastly, a small amount of time released meds is more effective than breakthrough meds. And since you're in WA, you're likely going to have a hard time getting anything--but asking for time released shouldn't worry your doc as much.

Congrats!

And craigslist for the table, both in the free section and furniture section. Moving it will be more of an issue. Or you can call your local Salvation Army, sometimes they provide furniture for free or at a discount for those in need.
Thrift stores (Goodwill, Salvation Army) often have 1/2 price days a few days per month, so call around. If you have a modest budget and are particular, furniture consignment stores have designer pieces available for 50-75% off retail.

LOLOLOL that was more of a rhetorical question but thanks! :winky:

Emily,

This is a very important statement that you posted. And from my experience, it is always better to "write it down" or "post it" to help with the confirmation!

I have had CRPS since 2008. Progress and perspective usually doesn't happen immediately. This is a marathon, not a sprint. You will have your share of struggles. But I think your relationship with pain is what you have made some progress with.

Good for you Emily. Good for you..............:Good-Post:

good for you!
 

My rsd cost me my former marriage, and it turned out to be a great thing. RSD is hard enough without doubters in your life. My favorite quote is like yours..."The only thing you can control is your attitude". Good luck!
:)

Ah well, your good mood was catching!

Murphy's law strikes again!!
 

LOL I should've never posted that! (just kidding) but you have to love the irony of feeling that way yesterday and my CRPS flaring up really bad later that night and today. I'm wondering if we did too much in PT. And debating on whether going to E.R., or waiting for doc tomorrow. I still feel the same emotionally as I did yesterday/ Just heightened pain! lol figures

Trying to just work through it. But this is a pretty good "flare-up", as I call it. I have started to prepare a point list to talk with the new doctor about. Still trying to get the Claims department to move along, being the squeaky wheel and all. I'm also supposed to hear from a lawyer today!

There will be times when you feel positive and capable and other times when you feel very low. That is just the way this goes. It's great when you have the good days and the good moods - it is uplifting and makes it feel as though you have a chance of feeling 'normal' again!

As a few of us have said, its a marathon not a sprint so you just have to learn to roll with everything. I often find that after a good spell where I start to think about what new things I might be able to do, the pain comes crashing back and I realise that I'd never be able to manage to do all the things I thought were a possibility. I'm over 5 years into this and I still get fooled by the good days!!

If you are or are likely to be suffering from low mood or depression, then the advice given is never to make any important life altering decisions whilst you are depressed. Depression alters your perception of reality and feelings without you knowing it. That said, if you are not depressed and your relationship is having a seriously negative effect on you, it may be better to take some big decisions about that sooner rather than later.

I would also caution you about launching yourself into a course at school just too soon. It won't do much for your self esteem or bank balance if you start, can't cope and have to drop out. Give it a bit of time, like someone else said perhaps wait till September time and see how you are feeling. By then perhaps you will have a drug regime which is working for you with tolerable side effects.

I hope that you manage to assert yourself with your doctors and can find drugs that work for you without the kind of side effects you have resented so far. Sadly, that hasn't been possible for me and I've had no restrictions on the medications I could try. My whole life is lived round my CRPS because for me, it is impossible to do otherwise and its not that I've not tried. Patience is the key!

Emily, I can relate to your feelings. Self-care is something many of us have put off to our detriment. RSD is something that demands self-care for the best possible days. You may want to print out your post for your self for the coming days, months, years. You WILL be OK, just keep taking care of yourself the best you can as you care for your daughter.
Keep posting and let us know how you are. loretta:)

Boy and how you were right, the pain did came crashing in.......Soo Last night my arm was extremely painful. All day really I think I over did it in PT. Well I had a doc appt today so I was just working through it till I could see the doc. And landed in the E.R. because not only was my arm killing me but it migrated to my left knee and foot (small spots) and my right knee and down my foot extreme pain. I went to er who didn't do much other than give me a pain shot and prescribe Tramadol, and a cane. They didn't actually have one, and unfortunately I couldn't afford one. My ex-mother in law is going to buy one for me tomorrow, but it is awfully hard to get around right now.

I saw the "specialist" anesthesiologist this morning. Who for some reason didn't think my leg were related to the CRPS in my arm?? I told them it the exact kind of pin in my arm, but they said it doesn't move like that. Usually from arm to arm or leg to leg. Which I though was a crock of ***** to be honest. Plus they said since I didn't tolerate to Stalate Ganglion Block that they didn't feel comfortable doing any other treatments, as they would just be more invasive, and I would be more likely to be hurt than helped...So they aren't going to be treating me any more. Washing their hands of me...Oh and they said to see a Pain Psychologist, to help me cope with Chronic pain....

Luckily I did have another appt with a new PCP for the CRPS and HE thought that my leg was totally related to my CRPS. That it isn't uncommon for it to spread like that. As CRPS can move anywhere anytime.He didn't do much other that talk about symptoms and the treatments done so far, and is going to get me to a Neurologist, to see if any other tests or treatments are available. Though he too said there wasn't going to be much else procedure wise that they can do... I think it will be a matter of time. Either the drugs and physical therapy work or they don't.

Needless to say I'm having a rough day....I haven't cried too much though. I'm trying to still be positive. Makes hard though when your told "we can't help you anymore". You all are very right it is going to be a marathon....I just have to stay determined. Thanks to you all!

The pain mgmt doctors I have seen have told me that the Stellate Ganglion Block is used to do a couple things: 1) treat the RSD/CRPS Pain, because the pain medicine is splashed on the nerve roots at the level corresponding to the pain 2) Diagnose the Pain as being from Sympathetic Nerve fibers that are firing too much. Sometimes (very rarely apparently, after 5 or so of these procedures, the CRPS goes into "remission" with fair/good reduction/remission of pain. For insurance purposes, the S.G.B. has to be done at least 5-6 times before they will authorize the treatment with a more expensive procedure such as the SCS.

If the pain doesn't go away with a S.G.B. then the pain diagnosis is not CRPS, it is arthritis or inflammation or perhaps "all in one's head" medically/psychologically because it is litterally not caused by the sympathetic nerves.

Just wanted to explain perhaps what the thinking is behind what the anesthesia doctor said to you.

It sounds like you had a horrible day if you had to go to the E.R.! I hope you are having a better day today. Gentle hugs, it looks like you had a breakthrough and then your new motivation caused you to work out too hard in P.T., making you take a step back. Two steps forward, one step back is okay...as long as you're heading forward overall! :hug:

"If the pain doesn't go away with a S.G.B. then the pain diagnosis is not CRPS, it is arthritis or inflammation or perhaps "all in one's head" medically/psychologically because it is litterally not caused by the sympathetic nerves."

I don't want to offend you but that is incorrect. A diagnosis of CRPS can be made regardless of the effect a sympathetic block has on pain.

Ner4pain
 

It doesn't mean I don't have crps. It just means I have Sympathetic Independent Pain, and not Sympathetic Maintained Pain. The doctor explained that to me before I had it done.

Just seems weird they would try 1 thing and give up....grr

It just means that you're not seeing the right doctor. I don't mean the wrong TYPE of doctor...just the wrong individual. When I had some lumbar sympathetic blocks done that caused my RSD to spread...the doc basically washed his hands of me and started me on a course of being bounced around from one doc to the next while things just got worse and worse and worse. Find a new doctor who will work with you on what course of treatment you want to pursue. It can be a hard step to take but is worth it once you find the right one.

My big wake up call was when my primary care doctor told me that I would have to get used to living life in a wheelchair. Sorry...that wasn't good enough for me...and I was pushed to finally change the entire course of treatment and seek a different path with a different doctor. Changed my life and now I am walking and back to work full time and doing things I didn't think I would ever be able to do again. It's hard...but it's worth it.

Good luck.

Catra---

How wonderful that you've overcome what your previous doctor said!! I glad you had the determination and strength to keep going. I know its been hard for me in just the past couple months, because except for minor swelling and mottling there is not much visually that has changed. Except hen I have a flare i tense so badly from the pain my blood veins pop up a little.
I am trying to stay positive too. The way the nurse talked was like all I could do was see a psychologist and learn how to "live in pain" better. Then when she said my leg pain wasn't CRPS, I looked at her like she was crazy. She insisted it wasn't yest didn't look at it or the pictures I took0229603 when it first started. It was extremely red but faded to the light mottling. I told her the pain felt exactly the same as in my arm too, but said the Doctor din;t believe it was CRPS. The doctor, who didn't even look at it. Said they've never seen it move from the left arm to right leg. Tried insisting that it ONLY moves arm to arm or leg to leg. Now I may be new but EVERYTHING I've read says differently. CRPS CAN "mirror" from limb to limb. But the disease is SO unpredictable it can move anywhere at anytime....

Doesn't that seem logical? Have any of you heard of CRPS only "mirroring" in limbs? Or have you seen/heard if cases like mine.
The new PCP I'm seeing says it's not surprising at all. Since the receptors in the brain are so close together for legs and arms, it could happen easily.

Sigh....this condition isn't researched by many doctors it seems....and he was supposed to be a Specialist....

I know I sound really boring banging on about this journey you will go through and there being no quick fix but your experience of this "specialist" is what most folk on here have been through, some of us many times over.

Even doctors who are fairly knowledgable can have their own very fixed notions about what does and doesn't fit with the diagnosis and this can be completely at odds with all of the clinical evidence out there. Sometimes it's because they frankly don't have the depth of experience they claim to. The latest research is highly suggestive that there are multiple phenotypes (subtypes) of CRPS with different signs and symptoms which react differently and may even have different causes. If doctor has only ever seen one or two phenotypes, that may cause him to reject other presentations. Other times, who knows why they have the opinions they do. Often however, unless they are active CRPS research clinicians, they don't read all/any the published output on CRPS because its only one of many conditions they treat in their practice. This means they are out of date and often incorrect although they don't realise it.

Its entirely possible that your other pain has nothing to do with your CRPS diagnosis but it needs to be assessed and other diagnoses ruled out, not some factually incorrect answer given. You need to weigh up whether to stick with the doctor and try to educate him, or whether to look for another doctor. I know its awful and its unfair but sadly, this is the reality of what you are up against. Have you gone to RSDSA to ask for advice about CRPS specialists in your area?

Ultimately even if it is CRPS in your leg, much of the potential treatment is the same - same drugs and advice etc. It might affect your access to insurance approval for the likes of physio if you need a diagnosis to get approval for multiple body parts to be treated or if more invasive procedures are being contemplated such as sympathetic nerve blocks because they are done in the lumbar spine for lower limbs.

This is all just another feature of the one about the "marathon not the sprint"...!! I know being offered psychological support related to living with the pain feels like an insult (been there myself). You need to do it when it's right for you but I can't emphasise how important this is in coming to terms with this diagnosis. It needn't be at the exclusion of continuing to try and reduce the pain or get rid of it. You still have to find a way to live with it in the meantime. One of the physios who worked with me (an 'old school') type - brilliant guy - had treated CRPS a number of times and his experience was that patients who went into remission could generally expect it to take around 2 years. These patients were starting from an aggressive, early treatment start point too. Not saying that's scientific or what happens to everyone, just that it can be a long road to recovery during which you have to keep going somehow.

I had to laugh reading this part. I have HEARD of it only mirroring and I have HEARD that it only ever occurs in an arm or leg and I have HEARD it doesn't spread at all...and it's all nonsense from doctors/people who are not well informed.

It's incredibly hard when dealing with a medical condition like this because on the one hand you are at the mercy of the doctors and need their help...yet on the other hand you have to be informed enough yourself to know what the red flags are to move on. Also hard because when you experience spread and the doctors aren't sure you are split between being HOPEFUL that it's NOT CRPS...but when you have CRPS...deep down you KNOW when it is the same. I went through months of this...knowing what I was experiencing was spread and yet letting myself hope that it was "something else" even though test after test proved that it was not.

There are lots of specialists out there who don't know much about CRPS...though they rarely admit it and prove it with the misinformation that they spout to patients. I have learned to run away (figuratively speaking) from such doctors. They can do far more damage that you can imagine and it's not worth it to continue seeing them. As frustrating as the process is...finding the right doctor is so important. There is no miracle cure or quick fix to this condition...