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worse day so far
hi, i have crps, and today has been by far the worse day for me, i know there are many of you out there who are alot worse off than me, but i just need to vent.
the pain has been at max level, i been dizzy all day, my balance has been very poor and this is whilst im on crutches. i start treatment on monday, im having a TENS fitting then on tuesday i start another round of physio but this time they know what they are dealing with. is this just the beginning for me and a taste of whats to come pain wise etc? any thoughts or ideas to try to combat this hugely appreciated thanks in advance |
Hi,
I'm sorry you are having such a bad day. Is the weather changing where you are at? The weather does a job on me.
I laid down yesterday to take a nap and woke with cold chills but I had electrical shocks in my legs and burning pain in my feet. It was 80 outside yesterday and I believe I just got too hot and then went into a pain cycle when I started cooling off. I wanted to say also I used a tens unit for a few years with my TOS and RSD and I think they help a lot. I loved mine. I had 2 that I used since I have bilateral TOS. I think you will see some help with them. My Dr. use to tell me to soak in a hot bath but it never seemed to help me. Some on here say they use epson salts and it helps them a lot. I don't know what meds you are on. I take Methadone, have for over 4 yrs. and I love it. Again others don't have good luck with it. We all have to find what works for us. I don't remember what state you are in but as for me, the barometer change does me in. Have you noticed a change in it. I sure hope things start calming down for you. Ada |
im in the UK, the weather has changed a little but nit dramatically, its got a little colder.
the only meds im onis gabapentin 1800mgs, however it has just been doubled. i just dont know how im going to get through this i really do feel alone, ive got my mum but she just doesnt know how to help me, is there anyway to get her to understand what this crps is? |
Hi,
The best way I think to let her know about it I think is to run some info. off of the internet and also go to the Library and see if they have some books on cronic pain and RSD for her to read. She wouldn't have to read the whole book. Just parts to help her.
My daughter and my son-in-law's sister are my caregivers. I don't know how much they understand about RSD but they are very helpful. I doubt though if either one could tell me what RSD is. We do feel alone in this, especially when our pain level is at it's worst. I don't think it matters how much support we have. They can help us with our care such as running hot baths, and fixing meals for us but as far as keeping us from feeling alone in this there isn't a way, I don't think. I don't remember how many times I told my Dr. I felt alone in this mess. The pain gets unbearable. I feel like I am in a better place then most on here but I have my days. I also think mine is getting worse in my legs and feet and I'm trying to deal with that. Still I know you and others are worse off then me. My Mother is gone now. She use to try to wait on me when I was at my worst. Unfortuntely she was worse off then I was at the time. We're here for you also. I know it's not enough support but at least you can come here and talk to us and learn some things that might help you to lessen the pain. I do know what you are saying. My Drs. favorite line was, " get in the tub soak in hot water and epson salt." I use to scream at him that it wasn't working." I get triggerpoint injections and have been on Methadone for years so that's helped me a lot. All of us find different things that help as I said. Do try that tens unit when you get it. I loved mine. As far as being dizzy, that could be the meds but I do know I was dizzy a lot when I was at my worst. I fell at least 13 times when I first started with this so you really have to be careful. I do hope that you start feeling better and stay on here with us and that will help you to feel that you are not alone so much. Ada |
Sorry to hear of your troubles. I've never had a SCS because my RSD was never localized enough to make a difference, or so I was told. However, if you run a search in this forum under "spinal cord stimulators" or "SCS" you'll pull up a lot of anecdotal reports. For an immense treasury of articles on the subject, go to the RSDSA Medical Articles Archive page at http://www.rsds.org/2/library/articl...ive/index.html and scroll down to those articles listed under the heading "Spinal Cord Stimulation."
For what it's worth, here's a complete list of my own RSD related prescription meds: 1. Neurontin (gabapentin) (600 mg.) [1-2/day]* * I find that our mutual drug, Neurontin, causes too much drowziness for my taste hence my reduction in use from what was 2,400 mg./day. Unfortunately, when I was on an alternative, Trileptal, it caused a dangerous drop in my blood sodium levels, and I've heard enough things about Topomax to keep me from ever trying it, especially with my history of glaucoma.I also take a gram of Magnesium a day. Many people on the board are also into a host of other nutritional supplements, while others are getting ketamine infusions, but those I'm told, sadly, are NOT available in the UK. Good luck and stay in touch! Mike |
Hi,
I am hoping that you are feeling better tonight. I do know that nights can be hard on us too with RSD. I know they are on me.
Let us know how you are doing. Ada |
Re
Hi there,
I am so sorry to hear that you are having trouble with your pain. I too have balance problems, this started after a guanethidine nerve block. I have tried the TENS machine, but it did not work for me. We had the machine set to the highest setting, which was 20, and I could not feel it, although I had a lot of pain due to my RSD/CRPS. Everyone is different with RSD, but please remember RSD is the worst pain you can every experience according to the McGill pain scale, so it will hurt a hell of a lot. I hope things look up for you. if you want to talk I am here. Pain free hugs Alison |
im feeling alot better today, the pain hasnt been so bad and constant.
the colour of my leg keeps changing but i know thats to be expected. thankyou so much to everyone who has took the time to reply with kind words. its just wait and see what tomorrow brings at the hospital. |
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I am glad things are a bit better for you today and much luck for your hospital visit tomorrow. Take care Tayla:hug: |
ive had physio today which went well, i also have a bone scan on friday morning.
but the pain is alot better and im feeling better |
The spoons theory
Hi friendsfan, nice to meet you :D Here on NT I was introduced to "The Spoons Theory"... I think it will be helpful for you as well as any other newcomers. Thanks for reminding me of it :p I've never run across anything else that can help describe rsd/crps in such a poignant way... reading it will help your Mom and others better understand what you are going through. It might make you cry, so have the Kleenexes ready. THE SPOONS THEORY "My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing. As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about my condition. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know? I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick. As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to under stand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try. At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have waht I have”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands. I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted. Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else being in control. She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become? I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has this condition. I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make y our self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her a spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this. I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me. We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night. When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t d o it all. I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared” Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, tha t everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons". After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Do n’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.” |
WOW thats great and just so real, thanks for that, its so simple with a real message.
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Hi friends fan
So you are from the UK too! cool. When did you get RSD? I hope that you are feeling abit better and that the TENS is helping you abit! Are you on anything other than gabapentin? I'm 21 and at university in Bath. I developed severe RSD 5 years ago. If you want to talk then just PM me. Love Frogga xxxxx |
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