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Incomparable Pain

Published on January 8, 2020 under RSDS General Info

Written by Hydi Godsey for the RSDSA blog.

My name is Hydi Godsey, I am a 51-year-old woman who has been married for 30 years. I have two girls. One of them is a 23-year-old in pharmacy school and the other is a 19-year-old freshman in college. This is the first year my husband and I have been empty nesters.

My injury which caused RSD/CRPD, occurred 16-17 years ago and was such a stupid accident. I am right hand dominant and was opening a door at work when my wrist popped. When I first went to the doctor that January, they stated that the pain in my wrist and thumb area was carpel tunnel.

From the beginning of January until the end of that same year I received a lot of different treatments. The treatments consisted of TENS units two to three times weekly for about four weeks, physical therapy for about five months, and 18 nerve blocks over a four month time span. I also completed lots of treatments by myself that included hot/cold water treatment, relaxation techniques, and seeing a psychiatrist. I saw many different doctors and was placed on many different medications during this 12-month period. I felt stupid and was crying all of the time due to the immense amount of pain I was in. I was super emotional and very moody trying to figure out what was wrong with me and no one could tell me. This was the hardest point in my life.

I would often leave my house and could not remember how to get back home. In the same two-minute time span I could be crying and laughing. My emotions were all over the place because I was in so much pain. No one believed that I could still be in all of the pain I had when I had tried so many different treatment techniques. One day I finally told my doctor if we could not figure out what the issue was, I think the next best option would be to amputate my arm. This made my doctor stop and realize something was really wrong. Multiple times through that 12-month period I had decided to cut my arm off at the elbow. I went and saw multiple different specialists throughout that year with one even being all the way in Pennsylvania. I was eventually diagnosed with RSD/CRPS.

For the next 3-5 years my doctors and I were trying to figure out what medications worked and what medications did not work. Those years seemed like a blur in my life. I felt like I went to sleep and woke up years later. This aspect of not knowing exactly what happened really bothers me to this day. I can remember different things here and there, but I do not remember the whole-time frame. There were times where I was still trying to figure out what medication worked and some of the time I was not on medication at all. I was so emotional, and I hurt really bad. I have had two kids and a mastitis while breast feeding my youngest child, but nothing has ever compared to the pain I felt while I was not on medication.

During this time of my life I thought about many things to help the pain and one of the ideas I had in my head was killing myself. I thought that would make all of the pain go away. The other idea I had like I stated earlier was to amputate my arm. I slept for days and days because when I was awake the pain was unbearable and all I could think about was suicide or amputation.

Eventually my medication regulated and now I have good days and bad days. My injury started in my thumb/wrist area and has now moved up my arm to my shoulder area. I describe the way my arm feels as continuously having a blood pressure cuff wrapped around the upper part of my arm as tight as it could be. My arm feels as if someone is pouring a cold substance down the inside of the arm below the tight level of the blood pressure cuff. My fingers have a tingling sensation running through them as if they are asleep. I cannot feel different parts of my hand, fingers, or arm area and the other parts are very sensitive. This injury has caused problems on the whole right side of my body. My knee will sometimes pop out and I cannot walk long periods of time.

These days, I can normally function three to four hours without needing a break. If I know I am going to have a big day planned I will rest the whole day before to ensure that I have enough energy to do what I need to do. I take the same amount of medication that someone who has stage four cancer takes. This is the only long-term treatment that has helped me find some sort of relief. I also take Zoloft for anxiety and stress.

Some temporary treatments I complete on a daily basis include different stress balls that I can squeeze and having someone push on my shoulder which helps alleviate the pain a little. I also meditate daily with multiple different relaxation techniques. I still cry just about daily as I still have good days and bad days. Normally there is one day each week where I have really bad pain where I sleep all day. On the days I hurt really badly, which are far less than all the good days I have, I still think about amputation and suicide.

A few things I have learned along my journey from my doctor include continuing to use your limbs or it will hurt worse and you will eventually get neuropathy. I repeat: if you are reading this and you have RSD/CRPS do not ever stop using your hurt body part. Although my arm hurts using it, it also hurts not using it. For new warriors out there, you may want to give up on your worst days like I do, but I have learned that you cannot give up and you cannot let this take over your life. One thing I have really worked on in the last 17 years is having sympathy for others. My instinct is to be a cold-hearted lady and not care because they do not understand the pain I have endured throughout my lifetime. It is especially hard when my kids complain about a tooth ache or an ankle injury. This part of my life makes me sad because before the injury I was not like that. I was probably one of the most caring people out there, but now I have to put a lot of effort into having sympathy for others.

One of my greatest worries in life is not being able to get the medication I need. I need my medication to live just like I need air and water. I hope to never go back to when my pain level was above a 10. When I was hurting so bad, I could not get out of bed and I could not do things with my friends and family.

This post was not written to get pity or anything from anyone. I wrote this to show how RSD/CRPS can affect me and my family. I want to be strong for my family although it is hard. It is hard to remember some things and I feel unworthy for my family because I am not making the same money I was when I had a job before this accident happened as I am on disability. I sometimes am not able to think and answer questions I should know due to my medication because I get into a fuzziness haze.

One thing I wish people without RSD/CRPS knew was that even though one day I look fine and the next day I am not doing too great and can hardly get around I am not lying about this disease. I do feel the way I do and anyone can feel this way one day and feel okay the next day.

Another main takeaway that I want people who have RSD/CRPS to know is that the worst person judging you is yourself and you should not judge yourself. You need to be strong in the toughest of times. You will need to rest. Do not be afraid to tell someone to not touch the injured part of your body. Although I am right-hand dominant, and I hurt my right hand, I now do not shake people’s hands with my right hand. However, do not let neuropathy set in and try to always use wherever your injury is. After living with this for 17 years, I can fully say I believe I have lived through the worst and this is my life.

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11 Comments

      1. Bill

        Good morning. My 84 yr old mom has been hospitalized and bed ridden since 1/19/20 due to excruciating pain in her foot, that has this week been diagnosed as CRPS. Can you speak of the medications you have used and found any relief ? Worried to see her in this much pain, I’m doing research on CBD oil as an alternative. Her foot pain literally came from out of the blue that night. Desperate for help. Thanks & best wishes to you for your continued recovery, filled with more good days than bad.

    1. Karen McGinn

      Which medications have you taken over the years? Which medication actually provides some relief for you? {stage 4 cancer} I have had just about every type of treatment and medication since 2005, but I find that only one med provides relief for me. This med also has no negative effects on my thinking and memory abilities. Since the insanity surrounding all of the pain medications has occurred, I have been unable to obtain my medication. I have never misused or abused it, but many others have. You know the rest of that story. Please respond and keep moving forward. Remember, there is no stopping God! Kindly, Karen

  1. Brenda Burnett

    Thank you for writing this. I had a knee replaced in 1/2017. I have been to 5 orthopedic surgeons who say it is fine-not to worry -it will get better. I ugly cried through your blog. It’s crystal clear to me now.

  2. Shannon

    Hi! I was literally JUST DIAGNOSED today with this, foot injury bartending and waitressing. Been working/walking 17k steps a day and the pain was unbearable since June. Hopefully therapy will get me on the right track. Great article and I’m your age p

  3. Patricia

    Thank you for sharing your stories. Husband has been dealing with this for 9 months now & I’ve been doing extensive research to try and help pain relief. It seems most physicians don’t know what to do & pain management in our area was useless.
    YouTube has some CRPS conference physician speakers. It’d be good if there was a website clearinghouse of info where patients could register their condition and say what medications helped. I see postings for Neridronate IV treatments in Italy that are reportedly successful but a National Institute of Health clinical study was inconclusive. The reps in Italy said the study wasn’t long enough.

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