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!

"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.

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...