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Sep 30, 2015 2:02 PM

Hello, I am new to this site. I was just diagnosed with RSD/CRPS a couple of weeks ago. I originally injured my knee at work at the end of July last year on July 24th, but was unable to get it looked at because a few hours after I injured it I was informed that my oldest son was killed in an accident at work. Now begins the ongoing stress that has not gotten any better since that day. I was finally able to go to the doctor in January 2015 and it was decided after and MRI that I needed to have my meniscus put back where it belonged so on February 19th, 2015 I went into have surgery, while they were in there they discovered more problems and did a lateral release also (all on my left knee). I was told I should be ready to go back to normal activities in 6 to 8 weeks at the most. Well, here it is 7 and 1/2 months later and my knee is worse then at was before the surgery. Now my whole leg is constantly in pain and my right leg has decided to join in to make my life that much more "enjoyable" (not!)! I am on Gabapentin 300mg 3 times a day, started 2 weeks ago and so far not difference. I guess I will just wait and give it a while to work. (I also take medicine for depression and anxiety, but this is the only one for the RSD/CRPS)

Sep 30, 2015 6:04 PM

I left out that i am a 44 year old female. I am currently unable to do most of the activities I enjoy doing (hunting, fishing, hiking, and camping.) Neurologists nurse just called and they had a cancellation so I am going in for my first visit with them tomorrow. Hopefully this will give me more insight as to what is going on.

Sep 30, 2015 6:11 PM

Good luck, praying for better days......

Sep 30, 2015 9:31 PM

Lost,
I had CRPS a while back, and I'm sorry you're dealing with this disease. I'm 15, and no doctor figured out how it started. For me, my "injury" was a unexplainable camping wrist, repeatedly misdiagnosed as carpal tunnel. Mine spread, but although my wrists were sad to lose (I'm an artist), my legs were the worst, the thing that made me unable to walk and take care of myself.

I'm doing better, but I'm probably just lucky. I suspect CRPS might be genetic, song add my mom's twin has the same diagnosis. When they give you new meds, keep track of effects. I'd recommend LDN (low dose Naltrexone) and DMSO (dimethylsulfoxide) as alternative meds. They may not be a cure, but I figure it's worth a shot.

When I first had DMSO (use 99.98%, not the 50% cream, for full affect) I got a rash and nausea, but feeling alive made it worth it. Plus, the side effects went away, along with much of the pain.

I hope you can get pain relief ASAP!

Sep 30, 2015 9:56 PM

Thank you Ferret bandit. I appreciate the advice. Do your feet hurt when you wear shoes? That is the worst for me right now, the pain is unbearable when I put shoes on and I have to wear fuzzy socks that are at least a size to big.

Oct 01, 2015 10:33 AM

Yeah, I couldn't wear pants or socks. I basically had to ignore the school dress code, for medical reasons. Luckily, my school is pretty okay with however you dress, so I survived without any serious issues with the school. 😂😮

Oct 01, 2015 12:03 PM

Welcome Lost Mom I am so sorry for the loss of your son. I too lost my son 29 years ago you never get over it. Just learn to go on with life.Ask your Neurologist to put you on Savella 50 mg twice a day. Good luck.

Oct 01, 2015 12:50 PM

Thank you weezie12 I appreciate it! I am sorry for your loss also.

Oct 01, 2015 10:34 PM

Lostmom, I'm so sorry for the losses of your son. (((Hugs))). I injured my left knee decades ago, twice, have chondromalacia of the patella, and osteoarthritis in it.. Because of a bone spur under the kneecap it buckles on me. Then I noticed my right knee was starting to hurt. I realized that by favoring the left knee I was compensating by putting most of my weight on the right, hence the added pain. I use a cane daily, but when it's bad I have a walker. It allows me to put equal pressure on both knees. I also use a strap on brace under the kneecap when it really gets to slipping in and out, and ice and heat, and voltaren gel. I hope you can find ways to help cope and hopefully find the cause and a solution. 🙏🌼

Oct 02, 2015 7:13 AM

Thank you for the advice FlappysLady81. I am already using a cane and my mom suggested I get a walker. It is hard for me to use anything to help since I was so independent before this happened and it makes me feel pretty useless. I realize that my life is changing and will never be the same, just having trouble adjusting.

Oct 02, 2015 7:37 AM

Lostmom, it took some adjusting (mentally) before I stopped breathing myself up for using a cane, walker, or electric cart. I put my cane in the basket to let people know I'm in the cart for a reason. Don't be hard on yourself. This is just a bend in the road of our lives, and I for one will not let it steak living from me. I'm not as active as I use to our wish to be, but I still get out when my body is in a calm spell. And I rest when I need to. Other people's opinions (healthy, judgemental) is not my concern. That they would judge others, without knowing the facts, says to me they are uncompassionate, and small minded people. They are the ones who, if it happened to them, would yell the most and not learn compassion still, because it would be all about themself. Don't let others keep you from doing what you need to be safe and healthy. (((Hugs))) and I wish you a blessed day! 🙏🌼

Oct 02, 2015 8:51 AM

FlappysLady81 thank you. I just need to adjust my mind set and remember I will have good and bad days and to just do the best I can day to day and ignore the people who are being narrow minded about what is going on.

Oct 10, 2015 1:38 PM

Long trips are not a good idea. I went to see my brother who lives about 4 hours away, made sure to stop every hour and walk, trip took 5 hours due to stops. My entire left leg, left side of my bottom, and now my right foot and knee keep cramping and the burning pain feeling is almost unbearable. Cramps and pain aren't letting me sleep well and my attitude is suffering.

Oct 10, 2015 6:12 PM

Hello there Lostmom!! Welcome to our family community. I want to let you know that you have come to the right place. We are a close knit, zany and wonderful group of people who are all ready, willing and able to come to your aide and support you in any way we can. There are some things you need to know that are important and will help you realize even further that you are meant to be here. We are all here for different diagnosis but all share the commonality of chronic, irretractable pain. You can come here, no matter your mood, and ask questions, vent, cry, get angry or whatever you need to do and there are no judgements here. We all understand because we all live it. No matter what you are never alone. It doesn't matter what time of day or night, someone will be be here to help you through. I am sorry you suffer so much pain and were diagnosed with these horrible diseases. I know that going through days in horrible and constant pain is less than ideal. Let me say, I am so very sorry for the loss of your son. I can't imagine the pain of a Mother losing a child. I can understand that you are feeling lost. Not being a Mom, I can't say I feel your pain however, I send you my deepest and most sincere condolences. I, too, have CROS/RSD, Degenerative Joint Disease, Degenerative Disc Disease, cervical spondalytic myelopathy, long thoracic nerve palsy, Costochondritis, hypothyroidism, scoliosis, moderate lordosis, SI Joint Disfunction with fractures and about a half dozen more things that I can't think of right now. I hope that with medication, physical therapy and support that you begin to feel better and get your physicality back so that you can go back to doing all of the things that you love to do. It is very hard also because depression and anxiety become worse with constant pain. I am sorry for being so long winded. I just want you to know that you are in a safe place and will be in my thoughts and prayers. Call on me any time and I'll be right here to help you. Keep your chin up, you're not alone and never will be as long as we're here. I'm sending you gentle {{{{Hugs}}}} to help you through. All the best and again, welcome. 🙏🏻🌻

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