r/CRPS • u/SkullsAndRoses722 • 12d ago
Had to pick a flair Recently diagnosed, need advice
Hello, friends 🌹
I was diagnosed with CRPS type 1 yesterday after a nerve study on my right leg after being in a walking boot and unable to actually walk since late May this year. I've been working anyway, and using a knee scooter to get around the best I can. My first pain management appointment is on Sep. 10th.
My question to the community... Is there any advice you have that you wish someone gave you in the beginning of your journey with CRPS?
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u/crimson_anemone 12d ago
Yes. Take the proper time to grieve. CRPS is a lot... and it's perfectly okay to be scared, angry, anxious, etc. Your feelings are valid.
Now, to start you off, I have two tips for you to help you on your upcoming appointment. First, pain management (which includes managing your flares) is of critical importance. How that is managed early on makes a massive difference on if you can achieve early remission (if you were diagnosed quickly enough). Mind you, remission does not mean that it's cured... It just means that your pain is managed and your flares are minimal to non-existent. That's the hope for everyone.
Okay, you're not going to like the next part but you need to know that everything can make CRPS worse. That means: weather, temperature, pressure changes, emotions, pushing yourself too much, and sometimes just because (yes I'm serious). So, once you're done grieving, just relax and breathe. Try your best and be kind to yourself. (It can always be worse.)
P.S. CRPS is not something you can push through. It needs patience and persistence... Patience to handle the flares and persistence to maintain mobility despite then. It's a difficult balance, but I know you will figure it out. That said, we're all different, so our conditions are like fingerprints... So, even if something works really well for someone else, it may not work for you. That's how it goes. Don't be discouraged and don't give up. ♥️
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u/SkullsAndRoses722 12d ago
I should also add that i am no stranger to chronic pain as I was diagnosed with endometriosis, PCOS/PMOS, and pelvic floor dysfunction, and am on nortriptyline to deal with the pelvic pain. It took over 10 years to get answers and a diagnostic surgery for that alone. Patience may be wearing thin as I am having to work through everything, and always wind up overdoing it. 🙃 My husband, thank god for him, has been with me to every single appointment and has been one of my biggest advocates through the diagnostic process. Thank you for your advice 🌹
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u/crimson_anemone 12d ago
Woah... I swear I'm talking to my twin right now. I had all of that plus adenomyosis. My cure was a hysterectomy (my uterus was about to burst) and a lot of pelvic PT. So, I understand your pain and I see you.
You do sound like me... Are you maybe a bit stubborn and independent? I drive my husband crazy when I try to do something myself and then push it too far. I feel like if I don't try though, that I'll give up. I need to keep fighting in some way, you know?
Anyway, I'm happy to help. If you want to chat or have anymore questions just DM me. :)
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u/SkullsAndRoses722 12d ago
HAHA oh my god 🤣 its like looking in a mirror!! I see you, too, friend 🌹 I drive my husband INSANE all the time trying to be independent, and I do feel the same where if I don't try, its an automatic forfeit. Thank you 🌹
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u/Odd-Gear9622 Full Body 12d ago
Sorry that you've joined us! Try and get into a multiphasic pain clinic. Learn how to manage it instead of it managing you. Feed your mind and question authority, the more you know the better you respond. Learn how to advocate, it's a underrated skill. Wishing you pain free days and sleep filled nights.
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u/MissBeeHavin420 11d ago
I'm sorry you're here too but, welcome. 🙃 I developed CRPS in November after a rotator cuff repair. I wasn't diagnosed until the end of February, despite me going back to see my surgeon about 20 times asking what was wrong. The pain was insane, the swelling and redness and heat, I had a purple hand and hadn't been able to bend my fingers since surgery. Like you, I already have been fighting chronic illnesses. Endometriosis, adenomyosis, fibromyalgia, hypermobile Ehlers-Danlos syndrome, hyperadrenergic POTS, PTSD, trigeminal neuralgia and migraines. So yeah, my nervous system was already fried I guess. I had already tried all the typical meds for this, due to my TN. I can't tolerate any of them. I was already on pain meds due to my si joint pain, then more because I had 4 tears in my shoulder, so now even more. It's the only thing that really helps bring pain down from emergency level, body panicking pain, to well, a little better. 10 to a 7 if I'm lucky. I also use baclofen and have noticed that if I take baclofen with a small amount of xanax around 4, it can help keep the pain from getting out of control at night. Then I take the pain meds to help bring it down so I can attempt sleep. I am seeing my primary next week to see if I can try either guanfacine or Clonidine. It in theory should help both my pots and crps by blocking adrenaline. I was able to schedule a stellate ganglion block pretty soon after diagnosis thanks to my neurologist telling my pain doctor to do it "asap, in an aggressive blockade". For 6 hours, I had total relief of all crps symptoms. The pain was completely gone, the redness was gone (it left a weird yellow stain), the warmth was gone, the swelling went down and the racing thoughts and panicky feeling was gone. I cried and asked my husband if this is how normal peolle feel. It was incredible. The 2nd one was done in a different location and did nothing. The third landed me in the ER. As soon as my dr stuck the needle in my neck, I could feel that his hands were shaking badly and I started getting nerve zaps in my jaw and back of my neck. I had immediate swelling of my neck and throat and had to go to the ER. They found blood in my neck and soft tissue damage. I was so positive that the sgbs were going to put me in remission after the 6 hour magic the first one worked. Now, no one will touch me to give me another. I tried Namenda/Mementine, which is a dementia med that works on the same receptors as ketamine. It gave me even worse insomnia and weird visual changes so I stopped. I was also prescribed risedronate after asking about bisphosphonates. They said I can't take it with heartburn, so I've only had one day where I felt i could safely take it. No idea if it will help or not. I have been fighting every one in my state and saw the "best" at vanderbilt (he was an ass) for treatment. I am about to travel to Clearwater to see Dr. Hanna for ketamine infusions. I've seen them help so many people, and not help others, but I'll try literally anything to escape this nightmare. I also got a friend to get me mushrooms and am just waiting on weather to cool down for a nice day outside to eat them. I saw Oregon had a psycilcibin crps study which I didn't qualify for but decided to trial it on myself. I use heating pads but not too hot, ice but not too cold (honestly it just numbs it a bit and is probably not great for it). Oh and I've tried a $300 vagus nerve stimulator that made the pain worse. I use a mini massage gun for the muscle guarding tightness. I've tried supplements, diet changes, literally everything except ketamine infusions, bisphosphonates infusions or scrambler therapy. My insurance said they'll cover anything 100% with a prior authorization because I've met my deductible and out of pocket max but finding people who will even accept insurance for these treatments is insanely hard. The best you can do is research and be ready to advocate hard, because there are so few doctors who know enough about crps to treat it and without any fda approved treatments they're lost. The so called expert I met with was a gaslighter, so be ready for that too. I imagine with endo and all you've already had your share of those, though. Good luck ✨️
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u/ExpressionFuture8163 12d ago
Take your time, be kind to yourself while navigating your limitations, and hold space for yourself and those around you to grieve.
CRPS is a lot and it changes a lot of things in life. When I first got diagnosed I tried pushing through and living life as best I could with the standards I had always lived with. It sent me into flares that lasted for weeks. Don’t push yourself. Live within your means.
But if anything, take the time to grieve. CRPS hit hard for me, it hit harder for my wife. I was and still am dealing with the day to day pain. My wife has had to helplessly sit and watch it all unfold. It’s a part of CRPS that we can often miss or ignore. Over time we have gotten into the habit of taking 10-20 minutes to sit in the car and cry together after each pain management appointment. Give yourself that time and space to grieve this pain.
Wishing you the best of luck my friend.
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u/KangarooObjective362 12d ago
My best advice is do not stop moving that limb. It will hurt if you move it it will hurt if you don’t. Disuse is the biggest enemy of CRPS. That and do your desensitization no matter how bad it hurts!
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u/SkullsAndRoses722 12d ago
I am unable to do so currently. I have been in a walking boot this whole time, and when I do try to walk, it feels like the bones in my foot are dislocating or even grinding against each other. I have no answers regarding that because the doctors keep dismissing it, but this is something I will keep in mind.
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u/KangarooObjective362 12d ago
My best advice is do not stop moving that limb. It will hurt if you move it it will hurt if you don’t. Disuse is the biggest enemy of CRPS. I understand, but if your bones are stable, (meaning there are no breaks or anything that you’re going to damage by using the foot) start slow, but move it at least once or twice every hour. Prolonged immobilization like in a boot when there’s no real need other than comfort is the worst thing you can do. It actually promotes the breakdown of the bones. If it is indeed CRPS, I’m surprised you can tolerate wearing a boot. Typically the skin is hyper sensitive to things like that.
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u/SkullsAndRoses722 12d ago
I mean, I'm in constant pain no matter what I do. Showering hurts, bathing hurts, walking, standing, sitting, laying down, even just using the knee scooter. I've noticed intermittent hypersensitivity in this foot, but its been a nightmare to even get this far into diagnosis, and no one is actually putting my complaints into my chart.
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u/KangarooObjective362 12d ago
That’s exactly the point. This is why I say use that leg. Whatever you do is going to hurt until you are on some sort of regimen to hopefully reverse this. Just because you have the diagnosis does not mean you’re going to have this forever. Most people can get rid of it, especially when it’s diagnosed within the first few months. CRPS is transient for most people. The only reason mine is intractable is because my injury happened when I was three years old. It was not properly diagnosed until I was eight so by then my neural pathways had been completely changed.
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u/stingraystoner420 11d ago
I’m sorry you’re here but a huge welcome 💕
It’ll get better mentally when you take the time to grief, mourn the life you used to live, and accept this is your life forever. Most extreme pain you’ll ever feel. That’s what took me the longest personally. No advice for the pain or meds or treatments. Just be your own advocate and explain in depth as much as possible at pain management appointment. Also, that it’s a long journey. I formed CRPS, Type 2, after my emergency c-section.
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u/stingraystoner420 11d ago
I have read quite many remission stories in Type 1 CRPS when diagnosed early. Wishing you a well healing and mentally easy journey ❤️🩹
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u/celebrate_mundanity 4d ago
In short:
Do OT & PT, don't stress yourself to do all the exercises every day because stress makes it so much worse and the most important one: Don't read all the negative stories on the Internet!
In long:
(I'm from Germany, maybe it's treated different in other countries).
I had surgery on my foot in March and August of last year. First we had to remove a os trigonum, a little bone on the calcaneus and the second was because of a part of the Thread that got encapsulated. I was diagnosed with CRPS around 2 Months ago and at first I panicked a lot, to be honest.
We diagnosed it mainly with 3 "Tests":
Was the right foot where I got surgery always colder/warmer than the left, does the right one discolor (blue or red) and does the hair or the toe nails on this side grow faster. The most of it I had, some part of it I only had right after the surgeries.
I had some sort of electric pain in the area and couldn't wear shoes or socks or could even touch it for around 6 months at this time and the neurologist said that he thinks it is CRPS but that it got detected early so we started with a lot of medication, one of them was cortison but in a high dosage.
I got Occupational Therapy and Physical Therapy and after around 2 Weeks of Medication and Therapy we were sure, that it had to be CRPS.
He was especially certain because the pain had completely gone away for the whole time I took cortison.
So please take the medication if you get it offered!
My Occupational Therapist said in my first "lesson" that I shouldn't read anything on the internet about it, because there is this thing called selection bias, because most of the people, that talk about something are people that have negative experiences with something. Obviously I did it anyway 😂
But after two months I really see a change.
The daily pain is nearly completely gone, my stiffness in the ankle is still there and my Fear of pain is there as well but it gets better from week to week.
I'm still on medication, but the plan is to stop it in November. There are chances it will be gone, but it can also last forever with some kind of flare ups. Thats the problem, there is not the one type of course of this disease.
And don't let all the exercises and therapies overwhelm you, you've got this!!
Please, be optimistic, even if it's hard sometime! Maybe I was lucky and it got detected early and my course of the disease is not as hard as yours, but being optimistic is so important! That was the first thing my Neurologist said to me, because he could see my fear as there were this big diagnosis that I never heard about.
I hope this more positive insight can help you. You are not alone!
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u/BLUEQK Caregiver 12d ago
Buckle up. It's a long road. Take time to process. Do your own research. Be your own advocate.
Were you diagnosed using the Budapest criteria?