Newly diagnosed
 

I was diagnosed in August. I have CRPS type 2 in my left ankle and I think it is spreading up my leg to my hip. I am always in horrible pain. I try to be positive but I just keep getting worse. I don't know what to do. I am knew to this and don't know much about it. I have been trying to research as much as I can. I just bought some vitamins and am hoping they will help. I am a single mom and although my daughter is great handling this I don't want her to feel alone or like she has to take care of me. Most days I can't even get out of bed. I have tried lumbar sympathetic nerve injections, but the last one was really bad and after my leg has been having the same pain and symptoms of my ankle. I just feel lost. :confused:

Welcome to this group and know that you are not alone. We are all here to support one another. I know what you mean about not wanting your daughter to feel like she has to take care of you. I don't want my husband to have to take care of me. He's 8 yrs. older than me and I wanted to take care of him in his later years b/c of all he's done for me throughout our lives. It wasn't supposed to be like this...

You have lots of options left if all you've tried is lumbar sympathetic injections and vitamins. What I'd consider most important is to find a healthcare professional who is familiar with crps- a pain management anesthesiologist or a physiologist to direct your care. There are many drugs available to you such as anti-spasmotics, anti-inflammatory, anti-depressant and pain relief medications. Physical therapy and/or water therapy is another option- the earlier it's started, the better. It's not uncommon to meet with a psychologist because of all the stress, strain and depression someone goes through with crps.

As you can see, crps requires a healthcare group approach. The good news is that you've been diagnosed early. Continue to read and get yourself informed because you will need to advocate for yourself.

I'm sure others will chime in here. I just wanted to say "Hi" and welcome to our "elite" group.

Hi Angelina and Welcome!!! I am sorry you are here for that reason of course.
One of the best things you can do is get educated about CRPS. There will be a lot of very good educational information here on this site as well as personal experiences that you will find helpful. I'm not really that great with computers and cutting and pasting type stuff, but will try and look up some documentation and give to you.
There are some members on here that really do have a great deal of education on this disorder. I'm sure they will come online and give you some references too.
One of the things that I have found to be most effective is reasonable activity. Not being mobile, is the worst for us. Keeping pain in control at a reasonable level is important. Besides pain meds, are you on like neurotin. or lyrica or cymbalta? These are some meds some docs use in treating CRPS.
For me, physical therapy both professionally and 'at home' was huge for
reversing the body limbs freezing up and regaining range of motion and keeping mobile.
You will find so much good information here as well as comfort and support. Please let us know how you are doing. loretta

I lucked out and everyone is very familiar with CRPS. They have delt with patients before. and I am seeing a pain counselor. I just don't know what other drugs are out there to ask about to try? I do think a muscle relaxer would be beneficial to me though.

I do as much pt at home as I can and I push myself even harder while I am at pt which is 3 times a week. I am on Lyrica. I have never heard of neurotin and cymbalta gave me bad side affects.

Hi angelina, good for you doing the pt and home as well as 3 times a week. That is what helped me so very much. Neurotin in the older form of lyrica. Some can take one and not the other etc. but NOT both at the same time. Not everyone can take cymbalta-its one that I took. I took neurotin for years and then my neuro changed me to lyrica. After 10 years, I'm not on either.
Hang and there, and hope you get some improvement in your symptoms. My daughter was nearly grown when I got CRPS in 96. I know it must be difficult. Take care, loretta

Thank you so much. How are you doing now?

Angelina, I'm doing OK, thank you. I have had some burning and tearing in my eyes, but nothing today. So won't panic about that.
I've had RSD since 96, but not diagnosed for 5 years. It is full body or 'generalized' But I am mobile and some of my severe symptoms that I had for so many years are non existent now. Like the uncontrollable spasms in arms and legs, the electric jolts that traveled thru by body out of nowhere. I was on 3200 mg of neurotin for years but no longer take it. Also, I no longer have touch sensitivity issues. I attribute that to PT 3 days a week, as well as 7 days a week at home. I forget if I told you, my therapist had me get several plastic bowls and put different things in them, like botton balls, rice, sugar, coffee grounds, etc and run fingers thru them.
The extensive PT gave me back nearly all range of motion in both shoulders and later when I lost my left hand -frozen like a board. the PT gave me partial use of fingers again. Also, when it moved to feet and toes curled off the floor, daily exercises in warm water got them back down to floor. So I'm so grateful for not being crippled like some are.
I have issues with my heart rate and blood pressure. I am 64 and on blood pressure medice for high BP. and a heart med to slow the heart rate down. RSD is a disregulation of the autonomic nervous system. It's the 'fight or flight' part of our nervous system. It regulates our blood pressure, heart rate, body temperature etc. That is why we can be burning up or ice cold. Why we can have high blood pressure or on occassion it drops so low we can pass out. It's called syncope. I've passed out several times. Also why our heart rate can go high or low. This disregulation explains why anxiety for many of us is an issue.
After I got RSD, I couldn't understand why I was experiencing anxiety issues out of the blue. It wasn't until I learned about the connection of RSD and the autonomic nervous system that I understood the reasons why. Look it up on Wikipedia. It breaks down the sympathetic nervous systemm, para sympathetic nervous system and the vegas nerve.
You'll find a lot of comfort and support here. Education is key. Taking charge of your health is key. Start a file and keep track of your medical care and all tests-like blood work etc. your blood pressure and know your numbers.
It is such a complicated condition-And everyone is different and responds differently to various meds and treatment. You will be the one who will suffer if your treatment goes south. Fortunately, I have had some very good Drs. But that wasn't an accident. One Rheumy said I had RA. Swollen hand, sensitive to touch, burning up- and frozen like a board. That didn't make sense, as my tests were negative for RA and it happened after an injury. So I went to a sports injury ortho hand doc and he knew in 1 minute it was RSD. Tests positive. Neuro did more tests and positive. So I am grateful I listened to that inner voice and went to the hand specialist.
Ask questions here, and reach out. even read old posts. experience of others here and learning from their research will really help you. It also gives you a sense of control over your health. knowledge is power.
How is your daughter doing? I have one daughter-33 and married. She is a court reporter. Has done one deposition on RSD for a malpractice lawsuit. I live in Arizona. The winters are wonderful for RSD, but the summers are brutal. My feet burn up. At times, though they can be like frozen ice cubes. strange huh. That's the hot/cold disfunction.:)
How are you doing? I never was on muscle relaxers but ask others. I take mirtazapine- an anti-depressant. Because it was 5 years before I was diagnosed, I didn't try the blocks. The PT was the main thing for me. Swimming was a huge help for me also. The water needs to be 86 degrees. I belong to a health club with indoor pool and they keep it at 86. Take care, loretta

Hi Angelina. I'm on Cymbalta for pain & the depression that comes with crps, Ketamine nasal spray, Ketamine cream for my foot, Tizanidine at bedtime for the spasms (I fall asleep quickly with this drug), Tramadol for break-thru pain, Vitamin D, Lyrica (love it), Nuedexta, and a blood pressure medication.

It's been trial and error for what has worked for me. When I tried to go off of my Tizanidine, I'd wake up with spasms so that medication's been a must for me. The Lyrica has really helped my muscle aches and nerve pain. That's my second "must have" medication. Without the Lyrica, I can feel the pain following specific nerve paths up my legs- it's a very different pain than my muscular pain.

What works for one of us may not work for another. I'd definitely talk to your doctor about medication for the spasms. Getting those under control helps alot.

Thank you that was alot of great info for me. I had no idea about the blood pressure. I used to have kinda high blood pressure and now it is pretty low. and really low for me. My foot is always cold. I live in Idaho and the winter is brutal for me. The cold weather is terrible for my pain. I am hoping that the summer will be better. I keep my room hot and that seems to help. I think I am going to try muscle relaxers to see if that will help. The last few days my symptoms and pain have spread up my leg into my lower back, and I can't stand it. It always feels like it is tensed up and the spasms are so bad. I am so greatful for my PT. He has delt with RSD before many times and his mother has it so he is very familiar with it. I just sprained that ankle so we haven't been able to push very much lately. I have started a binder that I print info and keep organized with what I find helpful. I have also started looking into herbal remedies cuz anything that helps right? :) I just am having a hard time keeping my hope and spirits up. It just seems to keep getting worse. I think I just need to learn more about it. Which I will. My daughter is turning 6 in a couple weeks and I feel awful because her party is at a skating rink and the first thing she said to me is that she was sorry that I couldn't skate with her and that she could choose somewhere else if I wanted her to. :( She is such an amazing little girl! She is handling this very well. But I have always had health issues. I have had seven surgeries, so she is used to mommy being hurt. She always wants to help and is always asking me if she can get me anything and telling me to sit down and do what the doctors say. LOL I just don't want this to make her grow up too fast. But I am doing my best and I love her with all my heart! That is all us parents can do.
Angelina