Hi everybody!

Before sharing my experience with RSD, I first want to say that for the past couple of months, I've been reading these forums and hoping that people are finding relief in their symptoms and pain. Before getting diagnosed with it, I never heard of RSD and I think it's really crazy to see how so many people struggle with it and it goes so unnoticed by doctors and by a lot of other people who aren't informed about it.

Anyways, I'm currently 20 years old and I got diagnosed with RSD a month ago. I was studying abroad in Ireland and suddenly felt this terrible pain down my left arm and didn't sleep for days because of it. I ended up leaving my semester abroad early in March because I wasn't getting any legitimate answers from doctors in Ireland (they told me to go back to the dorm and rest and stay distracted- didn't give any pain meds) and because I was having suicidal thoughts because of the pain.

Since being home, I've been diagnosed with Thoracic Outlet Syndrome and I have minor degeneration in my lower back in my SI joints from a past injury. I was given my diagnosis of RSD a month ago, which according to my doctors puts me at better odds of remission. For medication, I've been taking Gabapentin, Turmeric, Magnesium Citrate, Zoloft, omega 3 with multivitamins, and melatonin for sleeping. I've been going to hypnosis, acupuncture, and CBT for managing pain and stress.

Since being new to this, I guess I have a lot of questions for everyone on this forum. I of course want to hear more about your stories and things that have worked for you. So, I hope you all don't mind if I fire away some general questions that I can't seem to get solid answers from my doctors.

1) What therapies have worked for you all? I think I'm struggling with finding the balance between pushing myself too little and too much. My PT plan is kind of unorganized at the moment with water therapy, so I've been doing my other stretches but I don't feel like they are doing much.
2) which kind of leaves me to the next question... What are some strategies for dealing with the overall joint stiffness?
3) I've read that cold is absolutely terrible for crps, so what's the best remedy for the increased sensitivity and burning sensation? I guess it's just really strange because I would think to put ice on it to relieve the warmness, but it's not too advised from what it seems.

I appreciate you all for reading over this. My questions at this point are pretty general because I'm trying to get a grasp on this thing because I can see it sucking the life out of it. It's also been difficult because while I have an awesome group of friends and a caring family, they can't fully understand my situation and it makes it hard for me to talk to them about it for that reason. It feels like a lonely process, so I thought I would reach out on this forum and join to put myself out there and also listen and toss out anything that's worked for me so far.

Thanks!

Hi MDazzle!

Sorry it's been a couple days since you've posted with no response! I know it can be frustrating to pour out your story and not hear anything back for a while. Plus it was very well written and thoughtful

First off, there are several introductory threads started here by new folks over the past month where many members here have given great feedback to people who have been newly diagnosed. You could look back through some of these to get a feel for how this community feels/thinks/operates.

Second - and more specifically to you - You're only 20, you were diagnosed early, you obviously have a great head on your shoulders from your intro post, you have a supportive family and friend network, you've already begun several effective treatment modalities, and you've come to the right place to vent and share. In short, you have EVERYTHING going for you (although it may not seem like it with your world turned upside down like it is now). And you are going to beat this

I just want to make a couple of comments on your post and your general questions 1-3 above.

1) I dealt with similar frustration - lack of guidance and structure. I put together my own; it's a lot to put out here in response to a first post. PM me if you are interested and I'd be happy to give you a very detailed summary of what I did and what worked for me.

2) Same as 1.

3) Yes - it may seem counterintuitive, but ice is TERRIBLE for RSD. Period. I'm really glad you've done the research to have figured this out early on.

Lastly, I don't have much familiarity with TOS, but I know there are some members here that do.

My final advice would be to never stop asking questions until you find answers that make sense to YOU

Hi Dazzle. Welcome to this forum. I am so sorry you have rsd but hope that I can help you deal a little better with it by sharing what works for me. In answer to your questions they are as follows:
1)Stretches from a PT help. Water Aerobics for beginners is also helpful.
2)I do my stretches at home that PT gave me to do and walk a little and will try to go back to water aerobics at the YMCA again soon.
Medication to help reduce the inflammation also helps, like Advil, but not all the time because it can reak havoc on my stomach.
3)Neurontin/Gabapentin helps with the increased sensitivity and burning sensation I get. I take it every day (600mg 3x daily) along with (Percocet 5/325mg 3 - 4x daily now) to help calm down the increased sensitivity and burning pain.
I'm adding a #4 which is taking xanax and zoloft for depression and anxiety that rsd can sometimes cause. Stress can cause rsd to flare so this helps to keep my stress under control. I'm going to check with my psychiatrist about bipolar disorders, because I seem to have short bursts of energy and enthusiasm then I get really tired and depressed and I am also up all night and sleep most of the day away. I'm not sure it this is bipolar or if it's a spin off of rsd, but want to check. Hopefully it's not bipolar.

I hope I helped. Just a side note. Since RSD can affect everyone differently, the medicaitions and PT and other treatments used to treat RSD can also affect everyone differently and vary from person to person. A good PM dr, Neurologist, Pain Coping Therapist and PT can help you to find what's best for you. I hope you feel better soon. Take care. Sincerely, Renee.

Most recoveries come in the first couple years so use the time to be aggressive with it. Try to stay as active as possible. Treat symptoms like insomnia. Exercise as much as possible. Get a good doctor; consider the Mayo Clinic.

Pain meds often don't help. I'm not sure if they do any good even when they do. Many people get help from neurontin or gabapentin. Try to eat right and get lots of rest and sufficient sleep. Don't give up even if you turn into a long term sufferer. RSD will change your life if you can't beat it but it doesn't have to end it.

Good luck.

Welcome and I'm so sorry you are dealing with rsd ,so young .
At this moment because my body is in full flare up stage the only thing I can suggest and recommended you is www.rsds.org. ,everything you need to know is there,also read past postings and our profiles,you will get an idea of how we get affected and where we at now,I'm sorry not to reply like you deserve,but my body aching is more dominant this days then ever,wish you the best luck and hope soon ,you get the right doctors,right medical treatment and right medications,also therapy of all kinda,essential,blessings from Jesika

Sorry to hear that you have had problems. Diagnosis can be a real hurdle, so although it seems like dreadful news you should absolutely view it as positive point to start moving forward. Here are a couple things that might help, though i bow to the experiences of others who have more direct experience with CRPS.

1) Maintaining function where you have pain, and using desensitisation techniques where you have sensitivity (preferably under the direction of an occupational therapist/physio) are paramount. Disuse atrophy HAS to be avoided and pushing too hard is also counter-productive.

2) Ensure that every medical professional involved in your treatment has some knowledge or experience in your illness. A well-meaning but ill-informed physio/doctor can really mess you up.

3) Above all be patient, with the illness and yourself.

I'm happy to be corrected by others. These were the 3 things i wish someone had told my partner at the beginning of her journey. May yours be a swift one my friend.