New here and really concerned and somewhat terrified...
 

Hello to all, I'm Dawn

I am very happy to have found this site. I have been recently been diagnosed with RSD, after being attacked by a dog at work and having to have rotator cuff surgery. My ortho initially diagnosed me with RSD and impingment, and the workers comp doc also confirmed the RSD. A little back ground, I am 47 years old and I have lived with left side paralysis since age 7 due to a severe stroke, and the shoulder injury was to my right shoulder. Due to this life has become a bit more interesting. :winky:

I do not believe I present all the symptoms that I have been reading about, and have tons of questions. Answers are few and far between...

What I'm finding to be most prominant as far as symptoms go are: lava constantly flowing down my arm to my finger tips, slight swelling (mostly in the shoulder), severe numbness and tingling under the lava (so it feels like there are two arms not just one), insomnia (2-4 hours of broken sleep per night, short naps throughout the day can increase this to maybe 5-6 hours), and I cannot think straight to save my life...

I despise the drugs I seem to need to decrease the pain, and I really try to limit what I take. I'm worried that this will not get better, and this will be as good as it gets. I've tried very hard most of my life not to feel sorry for myself, but I am sorry to say, with this added to what I've had to put up with for 40 years, it is almost more than can be handled!! I've only been dealing with this for about 6 months, and am ready for it to be done.

I find therapy to be useless. I get upset with the therapist because she does not believe RSD is the problem, and during therapy she will firmly grab my shoulder to correct the angle of it while I'm lifting weights to strengthen my arm, this about drops me. She is convinced that I'm just pinching the nerve because of bad position. I try very hard to deal with the fire this immediately causes and not scream bloody murder, becuse I know she does not believe. I'm not sure what I can do to convince her?? I had to beg with tears in my eyes to stop putting stim pads directly over the area because that was killing me. stim is torture but she will not stop using it. Anyone else have issues with Stim?

I hope I'm posting this in the right area, if not please let me know.

Any advice would be highly appreciated!!!

Thank you,
Dawn

I would drop that PT person ASAP!
You don't have to stick with anyone that is not helping you and for sure ones that are causing you more pain..
*It is not the PT's place to decide what or what isn't causing you pain..*

Tell the doc in change what is happening..

It may be trickier if work comp is involved , but get an wc atty on your side if you don't have one for your claim yet and I sure hope you have your own drs to get best care..

Which RSD symptoms do you feel don't match up for you?

There is another possibility may not be , but I want to mention it just in case.
Since you mention rotator cuff surgery, I'm not sure how that injury happened with the dog attack.
But if there was a fall or hard yank or jolt to the arm/shoulder/neck??
Some of what you re experiencing might be thoracic outlet syndrome TOS for short.
Another kind of rare thing like RSD unfortunately.. You need experts or extremely knowledgeable drs & PTs to get a dx as well as correct tx..
It can be caused by impinged nerves and/or blood flow in the neck/shoulder /collarbone areas, even the pec minor can play a role..
Often there will be muscle spasms , trigger points in the neck & upper back areas.

If it is TOS- or something like it - the weights/strengthening PT is doing is a bad thing..it will make it worse.
but passive work on shoulder posture is a plus. meaning letting gravity do the work..
I'll put some links for you to read thru- so you can see if it fits a bit or not at all..
Some TOS forum sticky threads-
http://neurotalk.psychcentral.com/thread125577.html
http://neurotalk.psychcentral.com/thread84.html
http://neurotalk.psychcentral.com/thread135.html

Thank you Jo for your reply and for the info!!

The dog attacked happened while at work, and the owner was wanting to introduce me and my client to the guard dog so we wouldn't beafraid of it... He was in a small room with a half door and I was told to pet him so while reaching over the door, the dog attacked and a quick little tug of war ensued. :) Not sure who won, me or the dog... This happened in May, had ptand injections,then surgery, more pt and another injection.

The ortho claims it is RSD and a specialist for WC also says it is that, but I will read through the links and mention it to the ortho when I see him in a couple weeks. I have only a couple more visits with pt, so changing now would likely not fly, good idea though!!!

I do have a WC lawyer at this time, and have had many lovely battles with my employer so far, it is an unusual circumstance. Who gets attack by a dog while working as a job coach...

I feel so much better just knowing there are others out there to talk to, but saddened I'm not alone in this... Would not want anyone to feel this fire!!

Thanks again,
Dawn

opps I just double posted, thought I lost it all the first time and re-typed it, sorry.... :(

New members posts may have to wait a bit for approval...so double posts happen. no problem..

If you stay with that PT- Don't let PT abuse you or grab your arms speak up and be clear & firm.. tell them they are hurting you. They are getting paid to help you, not make you hurt worse.
You may have to be firm about protecting yourself from anyone bumping or grabbing you rsd areas. Even out in public, no use risking more pain.

It may even be some sort of "test" to see how much you will tolerate to see if it is really RSD or not.. wc plays some weird games, do they have any say about who does your PT ?

Did the dog & his owner get in to legal troubles?

If swelling is the main missing sx, from the RSD list then it probably is a fit.
Maybe the swelling sometimes appears later on.. sorry..:o

Does your atty know anything about RSD, like long term medical costs?? as unfortunately there is no cure and might spread...:(

You might what to look thru the RSD sticky threads, there is one with pictures, so others will know what to be aware of if they get similar sx.
Better to know what may lie ahead than be caught off guard and not prepared for possible new sx down the road....

Getting late in my neck of the woods.

Luckily for me WC has already approved the RSD,so I hope they are not trying to be jerks about it. I can see your point though... they are such lovely people...

I am on Gabapentin and have pain meds so that helps me not drop dead from pt. And I do tend to tear up and I can't stop the shaking when she gets to rough, which backs her off a bit. I'm not very good at expressing verbally that I'm in pain, too many years of hidng it.

The attorney's who is handling my wc case also handling going after the dog owner. I do not know if they know about RSD but will be finding it out!! Thank you for pointing that out, everything seems to slip my mind...

I have looked at the pictures, and I'm scared, pretty much senseless.. my right arm is all I have and am very protective over it. Had a severe panic attack when they told me they were going to do a nerve block and it would paralyze the entire arm... That was oddly enough very real fear, never realized I could feel that way. One good thing, if this spreads to my left side, I will have better coping mechanisms, first time being paralyzed would be a good thing :D

Sleep well, and thanks again!!

Welcome scubaforsythe. :Wave-Hello:

Welcome Dawn,

I am so sorry to hear about all you are going through. You will find solace, suggestions and companionship here. Jo*Mar made some excellent points all around. I think the TOS possibility is worth pursuing. I always harp that nerve entrapment should be explored when RSD comes up after any procedure. Dr. Lee Dellon goes so far as to say 80% of CRPS cases have an undiagnosed entrapment. The symptoms do mimick CRPS and a Nerve Conduction Study can help rule this out. It is important because treatment is totally different.

On PT, it is absolutely okay for you to advocate for yourself and it is NOT okay for her to be causing pain. I am concerned that what she is doing is making you worse. Movement and exercise is very important to recovery from CRPS but pain must be kept down. Nerves are already overactive and releasing chemical messages that get to your dorsal horn and brain and can cause changes. It is a fine balance. Many people find aquatherapy beneficial. You want range of motion without stress. If you are lifting weights over your head that can be a bad idea on multiple fronts, some just age related. Also when our nervous systems are already overloaded things go kablooey. I had radiating pain and tingling up my leg for months and thought it was spread. Turns out I was aggravating a different nerve than the injured one riding the recumbent bike. I figured it out after taking 10 days off my workout. My point is our systems our delicate and you don't want to add any stress to it. It is vital that we figure out what helps and what causes flare. Don't feel bad starting low and progressing slowly. Just keep at it!

Lastly, everyone's symptoms are different but I never had swelling of any magnitude either. I do have pain, temperature and color changes. Take a look at the Budapest Criteria and see where you fit. Keep taking care of yourself. Take what you need to manage pain but remember that there are a lot of med options. My mood went to hell on neurontin which is great for many people. Nortriptyline at bed happens to be better for me. Get your workup to be sure they didn't miss anything and DO NOT GIVE UP. Odds are in your favor to improve. Most people with CRPS get better over time. Stanton-Hicks and many other bigwigs support this.

Sending Healing Love, Littlepaw:hug:

Thank you Kitt for the welcome!! :)

Littlepaw, thank you for the encouragement and advice. I have been doing some reading and am definately going to talk more with doc at next visit. am going to look at the Budapest Criteria asap also!!! I definately don't want this to swept under the rug as that is how it feels most of the time.

How in the world do people function with no sleep? I'm having a very hard time with this, and am not sure how long it can keep going like this. I was never one to sleep much more than 6 hours a night, but now only getting 2-4, wow it's like I'm watching myself throughout the day, not fully being in my body. How do you get up and work all day and come home and take care of your family? I just don't see how I'll be able to do this and function with left arm useless and right arm on fire.... I'm feeling incredibly weak, and can't get out of my head what my mom always told me growing up, "quit feeling sorry for yourself.' I ust got off phone with her and we were talking about it, and she brought it up again.... :(
Is waking up truly worth it?

Thank you again. :)

Dawn,

Being sleep deprived never helps anything. This is one of many reasons to do what is needed to get your pain as under control as possible. Lack of sleep makes pain worse and vice versa. It is really important to identify your triggers and avoid those - over-aggressive PT being one. I can't drink any alcohol or eat spicy foods (God I love salsa!) both will cause vasodilation which puts me in a world of hurt. Overheating in general and a dependent limb position for too long without moving it cause pain. I am worse depending on my hormone cycle and adjust activity accordingly. Even if you have a hard time finding things that help you will be able to identify triggers to avoid. Try different meds if you are not getting relief. Tricyclic antidepressants like nortriptyiline and desipramine work well for some in addition or instead of the gaba/pregabalin meds.

Go to bat against doctors when needed and follow your instinct. My first surgeon, ortho, inadvertantly tore part of a nerve branch in my ankle, probably with the retractor. The injury was identified by a plastic surgeon peripheral nerve specialist and repaired through a complicated procedure. The orthopedist insisted my first procedure was a success, despite my intractable pain. I had to fight for referrals and did get them but only because I was stubborn about my care. Not everyone gets a nerve injury or scar entrapment during surgery but they can happen and need attention when they do. My original post-op hellish pain decreased by 80% with the repair. I did not get CRPS until another un-related procedure.Go see neuro, see plastics, see physical medicine, get NCS/EMG, get vascular consults, etc. CRPS can have an underlying reason or contributor which might be treatable. Don't give up on yourself and your own wisdom. Ask for help and go to therapy if needed. I worked with a wonderful woman who really helped me deal with panic and depression. I hope you find relief soon. Waking up is worth it. Sometimes I couldn't see ahead more than five minutes, but I have made progress and I am glad I haven't given in. I can walk a mile now more days than not after 9 months on crutches. Sometimes I felt I wasn't getting anywhere, but persistence did pay off for me and will for you too.

Littlepaw:hug:

Littlepaw,
I have read a couple articles concerning pain interrupting our ability to experience REM sleep, which in turn does not allow us to sleep a healing sleep. So I see your point on trying to get the pain under control. I am working on switching when I take the Gabapentin, taking at night when I need it the most. I have found that when I take it with the Oxycodone-Acetaminophen it settles the fire somewhat and I do get the 4 instead of 2 hours sleep. Does this sound like a sound plan, taking it at night as if I'm on 3rd shift rather than in the day? I'm also making a list of questions to ask my doctor when I see him. Thank you for all the ideas!! :) Your a life saver!!
Dawn

First let me say welcome! There are many people here that are sometime more knowledgeable than doctors when it comes to CRPS.

I am also a WC case so I can relate when it comes to that. They originally paid for all of my treatments and medication, until I had to undergo more expensive treatments. When that happened they decided that the CRPS was not caused by the injury and they should not be held responsible. The majority of WC companies will do whatever they can to pay the smallest amount possible.

As far as the sleep issue goes I have found what works for one person may not work for you. Personally I find meditation to work for me most nights. I also find keeping to a routine can help as well. Some other things that work for me are chamomile tea and melatonin, with Benedryl being a last resort. Of course check with your doctor before taking any medication.

Good luck!

Dawn,

Anytime. We all help each other. What time you take meds can absolutely make a difference. I found I was able to manage my pain during the day with OTCs and activity accommodation IF I was able to rest at night. For a long time that meant neurontin and tramadol before bed. Now the nortriptyline at bed seems to do the job of both though I still sometimes need tramadol if I have a really bad day. Getting restorative sleep has helped me keep my sanity and achieve some healing. I could not have done it without meds at night. For me there seems to be some carryover pain relief into the next morning. Taking them during the day was unappealing to me, I am little, sensitive and need to be safe to drive. It takes time to find out what works, so talk to your doc. Mine were supportive of meds only at night. I can't overstate the importance of rest and stress reduction. Doing too much, going too hard will impede recovery. Being gentle with yourself and your nervous system will help you heal.

Littlepaw

Those terrifying pics are the worst case scenario and are a very small percentage of cases. --So the rarest of the rare.

You won't experience every symptom, all the time. They might come and go to varying degrees. It's also difficult to measure the amount of swelling with the naked eye. I can tell when my wrist and hand swells, but in order for my therapist to document it (especially since I didn't want to be touched there) he used water displacement to measure swelling after certain activities.

You might want to ask for a rx with Melatonin. Ideally, you'll find a drug combo that will reduce (but may not eliminate) your pain to a degree to make sleep easier. I was on Ambien and never felt rested, but with the Melatonin (sorry I don't remember the name) I did! Others things that can help are taking a warm bath with Epsom salts shortly before bed and try exploring music designed to help aid you falling asleep--both helped me.

You're with a therapist that is clueless. If she is unwilling to learn about RSD/CRPS, than it is time to find a new therapist. I hope she is not attempting to put any ice on you? That's a great way to cause additional nerve damage. And I could not handle certain therapists touching me while working on me, while others were tolerable. Too light of touch is excruciating and too rough is as well. Stim was not an option! You might consider pt in warm water if you have that option locally.

One of my pt was disabled herself. She had MS and was in a wheelchair, but pain free. It helped that she validated that what I was going through was something she wouldn't have wanted to deal with. You've unfortunately had the experience of both a disability that you can't hide and now a disability that is invisible. If you unable to return to work, you might consider applying for SSDI. IMO, you should qualify with a Listed Impairment because of your combination of disabilities and should (in theory!) be approved within a fairly short period.

Don't give up hope that your current doc (or perhaps if needed a new doc) might be able to put this in remission for you. Some people respond well to stellate ganglion blocks, others don't. There's also ketamine infusions, and new meds and advances happening all the time, etc.

Thanks for welcome Kris!!! Sorry to hear WC lived up to its reputation! Kills me how they so easily kick you when your down...

Paw,
Awesome to hear I'm not far off on my thinking!! I usually feel like a zombie from the meds and I doubt anything I do will help that, I'm way to sensative to the meds. I'm not sure but I think the stroke I had has something to do with this. Thanks for the validation!!

Lit,
Melatonin, added to the list Thanks!!! I am compling quite a list of questions for my doc, he will be so surprised!! :) Thank you!!

You can definately feel the love!!! :grouphug:

Hi Dawn! So sorry to hear about the RSD, and especially not being able to sleep. I find that is almost the worst part of having RSD besides the pain.

I am now trying ambian. Was a little afraid of it at first, but am getting a solid 4 to 5 hours of sleep with it. So far it is the only thing that has worked. Have tried many many different things too.

I hope you finally find a way to get a few hours. :hug:

Please be very careful if you still drive, if you're not getting a full 8 hours of sleep on Ambien.

Allen,
So far I haven't found the right mix yet to get the sleep I so desperately need. And wow 4-5 hours still is rough!! I know I feel a huge difference when I get lucky and hit 5 hours, but still don't feel human... :)

Take care, and stay strong
Dawn :hug:

Even if you used to be fine on 6 hours, that might no longer be the case. If pain is causing a disruption in REM sleep, 12 hours might not leave you well rested.

I drive, but not if im feeling weird. It aggravates all the non drivers, but gotta be safe.

So far I havent slept walked, nor went and cleaned out the fridge, nor the neighbors fridge and woke up somewhere other then my own bed LOL!!

Welcome Dawn.

I find therapy to be useless. I get upset with the therapist because she does not believe RSD is the problem, and during therapy she will firmly grab my shoulder to correct the angle of it while I'm lifting weights to strengthen my arm, this about drops me. She is convinced that I'm just pinching the nerve because of bad position. I try very hard to deal with the fire this immediately causes and not scream bloody murder, becuse I know she does not believe. I'm not sure what I can do to convince her?? I had to beg with tears in my eyes to stop putting stim pads directly over the area because that was killing me. stim is torture but she will not stop using it. Anyone else have issues with Stim?

I hope I'm posting this in the right area, if not please let me know.

Any advice would be highly appreciated!!!

Thank you,
Dawn[/QUOTE]

Hi Dawn,

I couldn't help but notice you tag yourself Scubaforsythe. I don't know if that means you're a water baby, but if you are, I have found the most helpful physical therapy I do takes place in a pool.

I got RSD in 1990 following surgery on my left hand and over the years I have avoided additional surgeries (and I believe 'spread') on my shoulder and lower back by setting up a gentle rehab program in the pool. Unlike normal people, the rehab took months and months of gradually work, increasing my range of motion, endurance and pain tolerance, which I did and I got full use back.

While I never got full function back in my hand, it did improve, too. At first I couldn't use my arms or hands in the pool at all. I just kicked with my legs and feet, but later I could use my hands as fists and then eventually I could use my hands as I did freestyle, breast stroke, back and side. I always had to break it up, but as I did it more and more, I could use my hands more and more in other occupations -- writing, gardening, cooking. At the beginning I could tolerate anything touching my hand.

Swimming also gave me such peace of mind.

As you already know from your stroke, learning to accept not having your old life back is the challenge, but there is no reason for a PT to cause you additional pain.

This past year I spoke to a expert at NIH about the CRPS that developed in my foot, because of a Morton's Neuroma. His best advice. No pain flares. Be patient. Recovery is slow and gradual.


Best,
Darcy

Lastly, everyone's symptoms are different but I never had swelling of any magnitude either. I do have pain, temperature and color changes. Take a look at the Budapest Criteria and see where you fit. Keep taking care of yourself. Take what you need to manage pain but remember that there are a lot of med options. My mood went to hell on neurontin which is great for many people. Nortriptyline at bed happens to be better for me. Get your workup to be sure they didn't miss anything and DO NOT GIVE UP. Odds are in your favor to improve. Most people with CRPS get better over time. Stanton-Hicks and many other bigwigs support this.

Hi Little Paw,

Who is Stanton-Hicks? And, has he or she published anything about this? I'm just curious. If it's anecdotal that's fine by me, but I've always wondered if there has ever been any long term follow-up of CRPS patients. Getting better over time is certainly my experience of CRPS. Mine was diagnosed following hand surgery 25 years ago.

Thanks,
Darcy

Hi Darcy!

Dr. Michael Stanton-hicks is at Cleveland Clinic. I have not been there. He does loads of research and publishing. Has been at the CRPS thing a long time. The 80% of people get better concept is on an "Ask the Expert" interview that comes up when you Google Dr. Michael Stanton Hicks and CRPS. He recently did a CME conference in 2014 for pain physicians in Las Vegas and gave lots of great info about treatment paradigm. I will try to dig that up and post a link. I also really like what Dr. Pradeep Chopra has to say. He has a great talk on rsds.org right now. Interestingly says SCS is a no-no if avoidable. Seems conservative, wholistic and optimistic. I wish he were in my neck of the woods. My neurologist adheres to the most people get better over time philosophy, my physical medicine & rehab doctor does too. I like experts who don't tell me I'm totally screwed. :D

Littlepaw :hug:

Ugh the link is really convoluted and I can't even get it all. Lots of "hicks20%....blah,blah,blah!"

I found the actual PowerPoint used in the conference by googling the following - Phenoxybenzamine and Stanton Hicks. It is the first result that comes up from cLeveland Clinic Continuing Ed. Great suggestions in here that probably none of our doctors have ever heard of...like Phenoxybenzamine.

I got on this because I was looking at oral sympathetic blockers since I don't want the nerve block. I haven't tried this yet but have it in my back up plans if I don't shake this thing soon. Really good data on this med. Sad thing it's not available in US as a generic and brand is 3k per CVS. Ouch! I found generic in Canada for $106.00. You do need a script, but it's an old drug and is used for raynaud's so plenty of known history.

So nice to hear of someone getting better over time! You are my hero...

Littlepaw

Me, too. You have to have hope.

Thanks, will google Hicks and thanks for including Chopra's name, too. Right after, my second CRPS dx I went to RI to see him. He was great and for more than a year I did the LDN, and am doing ultra low dose now, but so far there has been no functional improvement. I still can't walk for more than 15 minutes without getting into a big flare.

It's a whole new world this time around. I am so thankful that many of the experts are posting links to their video presentation. It means a lot to learn from doctors who treat more CRPS patients than anyone. Doctors with warnings about what not to do. While I don't feel as alone as the last time, I am saddened by how little progress has been made in this disease.

My job now is to find a real time, in place doctor where I live. All I can find are doctors who want to do blocks, which never worked the first time, or doctors who want to do an SCS, which seems like the scariest thing in the world to me. I always felt I managed my disease the first time around as well as I did by doing less after the first surgery.

Sounds like you are doing a terrific job getting better.

Best,
Darcy

Trazodone
 

Many have given very good suggestions already. For restful sleep, I swear by Trazodone (Rx). It's a very old school antidepressant, but at much less than therapeutic doses. I take 50 mg 20 minutes bf I want to go to sleep, but many take double that. It isn't known for causing grogginess and is very cheap to buy since there are no patents.

:hug:

Sleep and symptoms
 

Welcome!

My orthopedist, an RSD specialist, told me that restorative sleep is the most important part of recovery. As my sleep diminished, my RSD got worse. I hope you find a solution. Gabapentin often has a side effect of drowsiness, so taking it at night may help. I take it 3 times a day, which helped a lot with pain. Nortriptyline also has the side of effect of drowsiness and it interacts with gabapentin to amplify side effects - so taking both at night really knocked me out and I struggled with insomnia before the pain. I would consider asking your orthopedist about nortriptyline as it also helps with pain and can in some cases help with mood, though it's no longer prescribed for mood alone. Melatonin is also a good option, since it's natural. Artifical sleeping aids, like ambien, have been shown to produce little REM sleep, which is necessary for restoration and recovery, so if possible, avoiding these are good, though any sleep is ALWAYS better than no sleep. I have started doing yoga nidra or evening relaxing yoga before I go to bed - it's a yoga that has you lie down and it walks you through releasing stress. It's has really improved my sleep now that the medication isn't enough. Others have made wonderful suggestions as well - warm bath (proven), meditation (proven), routine (proven), etc.

When I was first diagnosed, I didn't have all the symptoms either. I actually had a doctor refuse to perform my first nerve block because he said I didn't have enough symptoms. Many of them came later for me, some still haven't. My swelling was always mild and if you didn't look at my other foot, you wouldn't have realized my injured foot was swollen. As others have said, everyone is different and this condition progresses differently in everyone.

I can relate to you wanting to hide pain. That doctor who refused to perform my first nerve block said I wasn't in enough pain and it was because I didn't scream out when he touched me. I wanted to, but I am also so used to hiding my pain. However, physical therapy should NEVER cause you that much pain and it's important to find a way to ensure that you receive the care you need. Can you bring a friend or loved one with you who is willing to advocate for you? I did to my appointments with my first orthopedist who wasn't listening to me about my pain. Bringing my advocate finally got him to take me seriously and diagnose me with RSD. If not, do you feel comfortable talking to your orthopedist about this? My current orthopedist, an RSD specialist, has been willing to talk with my other doctors/ therapists on my behalf about RSD and what I need. Yours might be willing to do so as well. I know it doesn't seem worth it to switch PTs right now because you only have a few sessions left, but if this PT is causing damage, it is worth it to switch. Even if the PT is not causing damage, it might turn out that you are given additional PT sessions and then you have to be in pain longer. Trust me, I am one to simply push through the pain, but in the case of RSD, that usually means more and worse pain. I do very much hope you can find a solution here.

I haven't had regular stim, but I used a bone stim when my fracture wasn't healing and it was extremely painful. I have no idea if it was harmful, but no one should have to go through that pain, even if there is a small benefit. I would consider discussing this with your orthopedist and see if s/he wants you to use it.

I have had one sympathetic nerve block and it didn't paralyze my limb. I would ask more questions about what the doctor is considering doing. It shouldn't paralyze you. It should just block one part of the nervous system - the one causing pain (or the one suspected to be causing pain, it doesn't in all RSD cases). I'm now scheduled for a series of nerve blocks and have not been told that at any point, they are expected to cause paralysis. Was it mentioned as a possible complication or as an expected outcome? I can see it as a possible complication, but it's a very low risk.

I sympathize with your questioning of whether it's worth it to get up in the morning. I have struggled with this condition for 8 months and I am very much struggling with the same question. A few thoughts on this. 1) there is hope still for better treatment. It sounds like you aren't on many medications to deal with this condition yet, so there is hope that a better drug combination would be useful. My orthopedist strongly believes that opiods like Oxycodone-Acetaminophen do not help for RSD. I was on two in the beginning and they really messed me up. I was so much more clear headed when I got off opiods and there was no change in my pain. I take 900 mg of gabapentin 3 times a day, 50 mg of nortriptyline at night, 220 mg of naproxen sodium 3 times a day, many vitamins for inflammation and pain, and I used to take calcitonin. If this medication combination doesn't work, there are still other options my doctors have discussed with me like Lyrica and Cymbalta. Don't give up yet as not all the possibilities have been exhausted. 2) are you seeing a therapist? Nearly all patients with RSD experience some level of anxiety and/ or depression because of this condition. RSD is often in the sympathetic nervous system, which is the fight or flight system and directly related to anxiety. I myself have struggled with anxiety since pretty much the beginning and now I'm starting to struggle with depression. I am seeing a therapist and it helps. I didn't click with my first one but I have with my second. It's okay to not settle on the first doctor - personality does matter. 3) i have tried to do things that make me happy, even if they are small or "childish." For example, I have started coloring in children's coloring books and watching kid comedies. They make me feel better on the worst days. I've also tried to spend time with friends, though this has been really hard. And I've tried to do some hobbies, like crafts and art. This can help a lot and give one purpose to get out of bed in the morning. 4) as much as possible, try very hard to not think about how bad CRPS can get. Those are the rare cases. According to my orthopedist, who's on the RSDSA board, 80% of people report being essentially pain free after 2 years of treatment (they may need continued treatment to be pain free). It can get better. Now I say this as someone who very much looks at the worst case scenario, but with this, I found it debilitating. Try to stay focused on what you can do and not worry about what you can't control. Worry makes all of this worse.

I hope this helps. If anything I said doesn't, then disregard it. :winky: :hug:

Just real quick--swelling isn't always noticeable to the naked eye.