scared of spreading
 

Hey fellow Spoonies,

I am new to this whole chronic pain thing and so far I can tell that this is going to be an interesting experience in my life. The question I have for you guys is how do you not get terrified over the possiblity of your rsd\crps spreading? I got crps about a year ago and originally it was only in my right arm, but now I can feel it in my right shoulder and hand. I have read in multiple places that CRPS can spread to other extremities. Are there any tips that any of you can give me as to how to deal with it starting to spread? the fact that its spread to my shoulder and hand is really scaring me. Thank you for your help.

Hello Spoonie,

Sorry you are having new symptoms. When you say now you can feel it in your shoulder and hand can you give an example of what exactly you are feeling? Did you have any kind of new trauma or can you think of anything that seemed to initiate this? I have not had to deal with spread and am new to this well. Just wondering if more detail might help with an answer....

Sending Healing Love, Littlepaw. :hug:

Hi Spoonie,
Welcome but I'm for your reason for being here. At least you're in good company.
I had my CRPS spread to full body. Don't freak out! Some folks never suffer spreading or just a little. It's like this monster has a mind of its' own.
My ortho doc said something to me once that has tuck in my head and helped me deal with it all. He said "It is what it is".
All we can do at the moment is except what it is and fight the symptoms as best as possible.
You'll have more questions, sometimes just want to talk, rant, or just visit.
Just remember we are here and someone will always lend an ear.
Best of luck...

Hey littlepaw,

My RSD feels more like electrical shocks, stabbing, crushing and throbbing than burning, so now that felling has spread to my shoulder and hand on my right side. I don't really know what might have triggered it. Last Dec, something happened, it may have been that the pressure band I was wearing smooshed something more in my arm, I don't really know. Anywhos, after wearing the band ( at the time the doctors thought I hand tendinitis or something close to it) my pain spiked to the most unbearable pain I have ever felt and I had to go to the ER. They were the first people that actually saw it for what it was, RSD. After going to the ER, my flares have been more constant and now go into my hand and shoulder. I don't know what triggered the original onset of RSD, my best friend who has since recovered from RSD all over her body thinks it may have been from a blood draw, since my usually is most constant in my elbow. Thanks for your reply!:grouphug:

Thanks Russell! Just wondering, did yours spread slowly, fast, after another trama or just seemly randomly?

Welcome to the forum! Sorry for the circumstances.

Sure CRPS can spread. But it doesn't always spread. It does seem to have a mind of it's own.

I've been taking 500 MG of vitamin C daily. Some people in the know have recommended this and as the body processes vitamin C quickly, this amount is certainly safe. Others take more, but I take 500 mg.

Are you keeping your affected areas moving? What meds are you taking?

I firmly believe that a "multi-disciplinary" approach to CRPS is absolutely necessary. I use my podiatrist (CRPS is in my foot), my GP, my pain management doctor, my chiropractor and I practice meditation and yoga to help with pain. Just got a TENS unit, which I am giving a 2 month trial.

Good luck to you and keep us posted!

Hi Spoonie,

Did you have much work up done? I am always harping about nerve entrapment because of personal experience and because it mimics and is sometimes confused with CRPS. I hate to think of people suffering over a nerve entrapment that can be treated. I get suspicious of stabbing, electrical pains as being nerve related in a different way than CRPS. So classic. The elbow area is a common site of entrapment or damage to the ulnar nerve. I can say with the authority of experience that the pain of entrapment can travel both up and down no matter what doctors tell you. I had pain shoot both ways. My father in law also went through a similar thing. Ulnar nerve actually! Compressed during a surgery. I always say new symptoms deserve a new look-see. We cannot sell ourselves short because of the diagnosis given to us. See about a nerve conduction test if you haven't had one or even if you have....Before you worry about spread make sure there's not something else going on. Case in point, I recently had buzzing going up my leg and was really scared symptoms were spreading past my foot and ankle. Turns out I was aggravating my saphenous nerve at the adductor canal of the thigh (a common site for this) riding the recumbent bike at the gym. I only figured this out after months of worry because I took ten days off my workout, had symptoms disappear then return when I went back to the gym. Doh! That problem totally resolved within 3 weeks of my not being such an idiot.
If nothing else is causing your symptoms then hit the Vit C and n-acetyl cysteine. Try not to panic, stress hormones won't help. Mirror therapy is good for addressing central sensitization which may be related to spread. Keep movin' if you can and hang in there!
Sending Healing Love, Littlepaw:hug:

Hello birchlake,

I havent heard yhe vitamin c thing before, i will definitely try that. I am definitely keeping my affected areas moving. So far I'm not on any meds. After I went to the ER I was on oxicodon for a little bit, but now I am not on that anymore. My doctor has recommended to try this medical marijuana patch thingy. I want to research it a bit more before trying it. I just started seeing doctors for this recently because no one really knew what it was until about 2 months ago, even though I've had it for a little over a year. What is a TENS unit? I don't really like yoga, it frustrates me haha. But I am taking ballet right now. As far as meditative stuff I usually listen to music, usually classical when it is a bad flare day, but sometimes the vibrations of the music can hurt. I also try to read to get my mind off of it.

Thanks for the support!:hug:

Hey littlepaw,

I have some blood work done as well as x-rays and just yesterday had thermography imaging done. They said it looked like RSD. That is an interesting point though, I may look into that more. However, I did originally look into that type of thing and it didn't fit everything as I recall. With my pain, it will turn ice cold on my right arm and be normal on the left, it also has mottling of the skin as well as swelling. Also, it is very affected by my moods, meaning there are more flares when I'm upset, stressed, etc. Also, I have had burning pain before in my arm, especially when it is a very bad flare, it is just more commonly what I think of as an electric feeling. What do you mean by mirror therapy?

info- videos about it -
https://www.google.com/search?q=RSD+...herapy&tbm=vid

Littlepaw,

Yeah I just looked it up again and I never havehave any numbness in my arm. It's always pain. But thank you for telling me about that. :hug:

Thank you Jo*mar , I thought that that was what it was but that helped. :)

Spoonie,

There are other meds that might help you. Many people find relief with neurontin or lyrica or with the old tricyclics antidepressants like nortryptiline given at a lower dose than used for depression. I also take something called PEAPure, a complex fatty acid that affects mast cell activity which is implicated in neuropathic pain. It is a bit expensive and I now have to order it from overseas as the US pharmacy that had it ran into some kind of import issue. Not sure medical marijuana would be any cheaper. Dr. Pradeep Chopra has a good talk on rsds.org right now where he mentions the PEAPure. I have taken it for the last few months, don't know how much it helps but hey... Dr. Chopra also cautions about nerve entrapment and I would advise if the ER docs gave the initial diagnosis and you go tell other docs that you may have CRPS they are likely to follow. ER docs are great, but their training is to make sure something is not going to imminently kill you. They are not necessarily geared towards the kind of thing you are dealing with. Just be sure you didn't get misdiagnosed again!

BTW, entrapment does not always cause numbness, can cause electric sensations and shooting pain as well as coldness in limb and circulation changes. Nerves do weird things and don't always behave as "expected". A nerve conduction study is non-invasive and easily accomplished...If stuff is ruled out and you have CRPS that's one thing. It's another if your doctors aren't checking out all the options that might affect treatment and outcome. Can you tell I worked in healthcare?
Good Luck! Littlepaw

Littlepaw,

I'm actually allergic to most antidepressants, even in small doses. I took some to try and manage my anxiety and they all made me sick or gave me anaphylaxis. I am going to see a neurologist soon here and I will have that test done. And I have had other doctors look into it with only telling them my symptoms, and they have made a diagnosis from there. I appreciate you're insight and help. I'm sorry if I come off as non appreciative. It's just, for someone who has, I'm guessing, also going through people and doctors not believe your pain; it is hurtful to feel like I have to prove my condition to you when I only joined this site for support, not judgment.

Poop on the antidepressants - though TCAs are different than SSRIs. A pharmacist could tell you about cross reactivity. I am glad you are seeing neuro. Sorry if I am overspeaking. I just feel very strongly that we must advocate for ourselves. I know a heck of a lot of doctors and they do make mistakes. I also think it is easier as a patient accepting a chronic illness knowing that you have made sure absolutely everything was checked out. Especially with CRPS. It's right in the criteria that there can't be another explanation. You do not come off as unappreciative. You have a lot to process. And the great thing about the forum is you get ideas thrown at you from every which way and can decide which ones you want to pursue. I in NO WAY meant for you to feel judged. I am always, always hoping someone has something easily treated that will permanently resolve their pain. Something that maybe was missed. I feel like sometimes CRPS is a 'garbage-can" diagnosis with docs. My CRPS is unrelated to my nerve entrapment. I had a podiatrist tell me my cold blue foot with shooting pain was CRPS and I would be a chronic pain patient the rest of my life. Treating the entrapment actually solved that part of my problem and the CRPS came later after an unrelated procedure. Hate to see this kind of thing happen to anyone else...
Ugh! So sorry I made you feel bad.

Take care,
Littlepaw :hug:

Anytime I injure a new area I use Lidocaine patches to avoid spread. When spread to a new area seems like a serious issue, then I will usually undergo a stellate ganglion block.

Are those patches available at a drug store? Thanks for the advice

By prescription, but generic now. The brand name was Lidodem. I actually prefer the other manufacturer, they stick better.

óki
 

Hi again Spoonie,
My CRPS started in my left arm by having surgery after a bad accident. It seemed to spread sort of randomly but once I fell breaking my right wrist the spreading quickened. After that surgery I became full body rather quickly.
In my case my CRPS is complicated by also having cerebral degenerative atrophy.
I fall a lot when I try to do something out of my wheelchair.
So my answer to you is once I suffered a trauma after having CRPS the spread sped up and it became full body within two years of the initial accident.
I hope I explained myself correctly and somehow helps you...

So sorry
 

I'm so sorry this might be spreading. I sort of hesitate to share my story as I don't want to increase your worry, but maybe it will help. I have had CRPS in my foot since July. In December it spread to my ankle. In January, it spread to my calf. Now, I'm showing early signs of it spreading into my knee. On February 2nd, I had a sympathetic nerve block. At that time, there was no sign of it in my knee. Just over a week after the block, the mottling is above my knee. I have had no new injuries. I was super hardcore about preventing spread. I'm on gabapentin and neurotonin, lots of supplements including vitamin C 1000 mg, and I tried multiple treatments including aggressive physical therapy, acupuncture, chiropractic, and therapy. Nothing has stopped the spread and no one knows why, including a leading expert in the field. I believe stress had caused spread in my case. On February 6th, I had an e extremely stressful day and the spread to my knee started after that. I have problems with meditation and I can't do many types of yoga right now, but I still highly recommend anything that reduces your stress. There are many types of yoga, so maybe try another like nidra yoga, hatha yoga, gentle yoga, or restorative yoga. Meditation doesn't have to be this transcendental thing - it can be just sitting and trying to focus on your breath, without changing it, even for 5 minutes. Starting in January, I have been trying to do these things and I see their potential, if I can just overcome my anxiety and do them. Maybe they aren't for you, but I strongly encourage you to find something. Maybe an anti-anxiety med. And I second an earlier post that medications like noritytripline are different than regular anti-depressants. They are many options, don't stop at the first one that doesn't work. Treatment is supposed to stop spread, so consider asking your doctors for more option . Gabapentin is a typical first step and I'd consider that before medical Marijuana which has less research. Research all the treatments on sites like RSDA or various books and decide what you are willing to try, then ask for that. Doctors don't always offer; we sometimes have to ask. I hope this isn't spreading for you and I hope you find relief soon.

Sorry, I didn't really state my point in my post - An earlier poster is right, it is what it is and it's going to do what is going to do. There is no magical solution. I'm not saying that is easy to accept that at all - I haven't yet - but it might be good to keep in mind as much as possible. I wish you the best.

:grouphug:

Thank you Maygin for telling me your story. Honestly, even though it is scary and I'm sorry it is happening to you too, it comforts me in a way knowing that I'm not the only one. I'm sorry that you are dealing with this, because it sucks. Thank you for the recommendations, I will definitely bring those up to my doctor. Is the drug you mentioned as the first usual step addictive? Yeah I'm in college right now so maybe it does have to do with my stress levels being too high. Thank you for your support :grouphug: I hope you stop having spreading

Russell,
Yes you did explain yourself correctly and it does help . Thank you for sharing your story with me. Even trying to do things outside of your wheelchair is great. Your strength is very inspirational. Don't give up! I hope you have better days. Thanks for helping me with this

Med
 

As far as I know, gabapentin is not addictive in the way that perocet and the other opiods are; however, the body can become used to it, so one cannot just stop taking it without stepping down on it. The biggest side effect is drowsiness, which hit me hard for the first month, but then went away.

There are many other medication options. A drug that works for one of us might not work for you. But pain is a resource hog, so it's important to get it under control, especially if you want to stay in school.

While I have no proof of this, I believe that my working 12 hour days 6 days a week leading up the election caused the spread. The pain was super concentrated before that. Of course, stay in school if you can; I just urge you to pace yourself and try not to get super stressed and overwhelmed. It might be a great idea to see a therapist to help with relaxation techniques to get you through the stressful times, like finals. There are things besides medication, like positive thinking, mirror box therapy, desensitization, laughter therapy, yoga, meditation, thai chi, and qi quong that can help with the pain and reduce stress. Try out each and see what works for you. There might even be videos at your school or a free class. For me, most of that didn't work until the pain went from intolerable to tolerable with medication. Mirror box therapy and desensitization were the only things that moved the pain notch a little before we found meds that worked. I wish you the best. You are welcome to PM me if you ever want to talk. I'm so glad my post made you feel less alone. There is power in feeling like you aren't the only one. Take care! :hug:

Hi Maygin,

I'm so sorry to hear of your continued problems.

Totally, totally agree with you on this. 2 years back, I could "feel" the thing spreading, and I had been burning it hard on both ends, with rehab efforts and projects for work. After one particularly stressful 12 hour day I ended up in the ER, and they all scratched their heads the same way.

Yes yes and yes. It's tough to meditate when you're on Threat Level Orange Pain Alert, but it helps, a LOT. I just sit as comfortably as possible, close my eyes and repeat "I AM" internally for 15 minutes. Just a nice quiet repetition in my head. Sounds cheesy but try it. The mantra forces the mind to quiet down.