You Are Never Alone…

You need to know Complex Regional Pain Syndrome is a real disease.

You need to know the pain is real.

You need to know you are not crazy.

You need to know there are people who understand what you are going through.

You need to know there are people experiencing pain like you are.

You need to know it CAN go into remission.

My Life with CRPS- Jim Laughlin
This is me, I can be part of your support system if you need me.

Remember, lonely and alone are 2 different things, you are NEVER alone!

Complex Regional Pain Syndrome or CRPS is just a disease and it does not define who you are. You are strong and this disease will not beat you. Yes, you are in for THE battle of your life, but you don’t need to fight it alone, there are more of us than you think. Facebook is a great place to start looking for support groups! Over the past few weeks, I have joined dozens and they are an absolute lifesaver. Just search crps or rsd.

When you need to cry, cry. When you need to yell, yell. When you need to scream, scream. Let it out, let it all out. Bottling up how your feeling is not healthy and can work against you, expressing how you feel is a good release. Speak with your spouse, family, friends, a doctor or a therapist, support groups, anyone who will listen. This disease wrecks havoc, not just on the body, but your mind also. Your mental health is just as important as your physical health, treat them equally, you need balance restored to your entire being.

Find doctors that are very familiar with CRPS, do not be afraid to ask how many patients they have successfully treated with the disease, they work for you, hire the right people for the job. Some doctors will not know anything or very little about CRPS, this is OK, it just might make finding the right one a little tougher. Find a support group, join forums or even start a blog, make Google your search partner. You only want positivity in your life. Be selfish, it is OK. This is time to take care of you.

It is very important to remember that your loved ones will not understand what you are going through or feeling. Be patient with them, they love you. They may be scared or are unable to watch someone they love in pain. This disease will not only push you to your limits but your family and friends too. You may lose some along the way.

Keep a positive attitude. Stay busy. Exercise the affected limb. Be honest with your doctors. Do your own research. Be the Chief Executive Officer of your CRPS, take charge. Get to bed early. Have healthy eating habits. Have a sense of humor, sometimes laughter IS the best medicine.

Never quit, the pain shall pass eventually. It may last a minute, an hour, a day, a year or even longer, but there will be an end. Always remember to breathe through the pain. Keep only positive thoughts in your head, negativity must not be a part of your life. You are stronger than you even know, keep telling yourself that you can do it, you can beat it!

I do understand, I am living with this disease too.

I am here for you, and you may feel lonely but you are NEVER alone!

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Comments 11

    • Brenda, thank you and also thanks for the tweets. I will looking and reading your blog also. I have to run out to grab……you guessed it, medications.

  • This post is exactly what I needed. I have felt so alone lately and have been told I cry everyday as if that’s too much. It’s so hard not to when u have a sister who u have literally begged to come over because u didn’t want to be alone, the pain was so unbarable but instead she drove by and never came in because she said my text had a tone. A few days later she told me she doesn’t regret not being there for me and she wasn’t sorry. She said she would do it again if she thinks my texts have a tone. She also abandoned me the night before the appointment of my specialist and I am unable to drive that far on my own without excruciating barbaric pain. So yes I have been feeling alone and it’s made me cry everyday. I’ve been wanting to share this since it happened over the past few weeks. I’m sorry if this wasn’t the place to share this. I don’t even know if I’m going to post this.

    • Absolutely this is the place to post it. I thank you for doing so. The crying is not a choice or feeling sorry for yourself or because you are ‘being too sensitive’, it is a symptom of this disease. The limbic system, which controls emotions, is affected by CRPS. It is out of our control.

      If your text has ‘a tone’, whether it does or not, it is how the text is perceived, not how it is written. I don’t know if that makes sense, it sounds better in my head. Anyway, your emotions are out of freaking whack, CRPS does that to us, period.

      CRPS can cause major issues with family & friends. I encourage you to talk it out, hug it out or cry it out. We may feel alone but we are not. We need to realize that or CRPS causes feelings of isolation, a little paranoia and feelings that no one understands. We need to understand that our actions may not be what we actually intended. Does that make sense?? It’s like we have to be our own therapist, I guess. The CRPS is causing these issues, but don’t let it take control, knock it back and try to be the real you.

      I don’t know if that helps. I am NOT a therapist, I am NOT a doctor. I am just a guy trying to help. But, I have it too, so this may be just CRPS talking.

      • Thank u for making me feel better about posting that. I felt really awkward about it but I appreciate ur understanding. I had no idea CRPS affected the limbic system and emotions! That makes me feel a little more normal now. This thing with my sister is impossible to talk out and/or hug out. She does not like to talk about anything. Plus, she is a very selfish angry person. She does this to me because she knows she can get away with because of how loyal I am. Anyway this was eating me up inside and hurts so badly I just couldn’t hold it in anymore. I was diagnosed over 2 years ago and my brain is so foggy from these meds and from CRPS I haven’t been able focus long enough to read a lot about this disease. A lot of what I have found is written in medical terms. All I know is that this is when you need people to be kind to you. Especially when you are kind to them. This such a scary disease and I feel that if you are fortunate enough to have understanding people in your life it’s makes a world of difference. I have just a couple people in my life like that now. I guess because I am so different than my sister I can’t even imagine being cruel to anyone who is suffering and needs you. Thank you again for what you wrote. I’m so glad I can talk/type about to others who where unfortunately understand this disease and what we deal with. My limbic system is kicking in because I’m getting very teary thinking about all of u. Stay strong everyone.
        Cindy

        • It is very surprising how much CRPS affects the mind and body. Also, like you mentioned the side effects of the medications. Read through my blog, it is definitely a work in progress, I have a long way to go, but it helps me to write/type it out. If there is ANYTHING you have questions on, feel free to contact me through the contact page, I think it works, lol. This is all new to me, I am learning as I go one how WordPress works.

  • Thank u very much for ur encouraging words see this us exactly what I need i need someone who just understands I have been dealing with this since 2012 and I’ve been pulling my hair out cause no one around me understands the pain they think well yes she hurts but not like all that they don’t know what is like to hurt that bad and can’t understand why or just how to make it stop and taking things like Tylenol and other things like that just want stop this So its been very hard on me even more so when u don’t have insurance and can’t afford to go to the doctor so u just have to live with the pain so thank u so much it means a lot when u have someone WHO FINALLY JUST UNDERSTANDS.

    • I am so sorry you have to deal with having no insurance. Have you tried gofundme.com or youcaring.com? I just got a tweet about a new drug, its in its very early stages(or shall I say its not profitable yet) its called neridronate.

      I am here if you need me. I will keep writing. You’re not alone, stay strong.

      • Neridronate has been used in Italy and I believe is in Phase III testing here in the US now. It is similar chemically to drugs that are used for osteoporosis. If it gets an indication (approval by FDA) for use in RSD/CRPS, I am sure it will be only for bone pain. I don’t think it will be a wonder drug and I am sure it will be very costly. That is just my opinion.

  • Dear Cindy – I am so sorry you are facing those challenges. No one should have to suffer due to lack of insurance. I’m originally from Canada and it took me a long time to figure out the system down here. Back home everyone had access to medical care – no matter their financial status. The system down here is very foreign and I don’t get why one of the “richest countries in the world” can’t afford to take care of its people. That said, there is always help available for patients without insurance – you just have to do some research. Do you have access to a computer or use a smartphone? I found some interesting info on this link. It may be of some assistance. https://billadvocates.com/get-medical-help-youre-uninsured/

    And don’t forget about the US Pain Foundation: https://www.uspainfoundation.org

    Are you covered by Medicaid? Are you working now? You can message me if you’d like – I’m asking so that I send you appropriate information for your current situation.

    Did you know that every major pharma company has some kind of Patient Assistanve program so that patients can get their medications with little to no copay? Don’t give up, keep on fighting and as Jim said know you are not alone. Hopefully you’ll be able to find some medical care soon. I couldn’t imagine dealing with CRPS without my meds. I wake up with my arms on “fire” and know you must too. I will keep digging and see what I can find that may be of help to you. ((Big hugs))

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