Introduce Yourself Here.....

Hi Kerrie and welcome. You'll find this forum very user friendly and the people here very caring and helpful.You sound so isolated and alone; I truly feel for you. Is there any possibility that you could move to a less rural area where they have more services? I know that
s a big ask but it might be helpful for you in the long run. I live on my own and also raised my daughters by myself and they have more or less deserted me. I don't have any friends near where I live but I do have nice neighbours. Although I am very independent and a bit of a loner. I have my dog and 3 cats to keep me company too.
Go ahead and ask any questions here on the forum or if you just want to vent that's fine too but keep writing your story and anyone here will try to help you.
Take care
Gayl

Thank you everyone for your kind words and support. It's a real breath of fresh air to know that there's still caring people in this world. 🙂

Hi Johnno,
A big thanks to you for your suggestions, I really appreciate it. However I will not be calling an ambulance for transport, and other services like CWA and Rotary may exist in this town but with the gossip and lack of privacy, sadly I cannot approach them.

Kerrie

Hi Gayl,
Thankyou for taking the time to write to me. It seems that you are completely understanding of my situation as you are in a one very similar and that's sad. I have finally received a return phone call from the region's health care division. They are looking into my privacy and confidentiality breaches by both mental and physical health practioners who have leaked my deepest darkest secrets to people without my consent. I've also been told that I will be assigned an advocate to help me navigate through the NDIS paperwork with a view to relocating somewhere where I can access better services for my disabilities. It's all just talk right now and I'll believe it when it happens! It's only taken 4 weeks, countless emails and a million phone calls to get a response, but at least someone heard me.
I'm really happy that you have your furry companions, there's nothing like a cuddly friend who doesn't judge or hurt you like some people do. I'm saddened that you also feel alone but your neighbours sound like wonderful people, you're very lucky. My neighbours wouldn't know if I'm dead or alive, they don't care. It's a pathetic town filled with gossip mongers and the sooner I get out the better. I'm feeling a bit more hopeful tonight, I pray I'm not let down again.
Tell me about your situation with regards to pain and how you are coping with it, perhaps it might help me in some way.
Thanks again for the kind words,
Kerrie 🙂

Hi Kerrie
I have sent you a private message, not that it's private but long winded and the other lovely people here don't want to hear my story again 😛 :cheer:
Take care
Gayl

Hi Kerrie, I just had a thought that what I said in the pm didn't really answer your question about how I deal with my pain.
I take a mixture of prescribed pain killers to start with. I also take a nice hot/warm bath with Epsom Salts and rub the water into your skin with a scrunchie or a face cloth and relax. Because my pain at the moment is mainly in my hands I fill the sink up with as hot a water as I can stand and sometimes add a bit of epsom salts and gently massage my hands and wrists, make fists and stretch the fingers. I also use a wheat pack on my hands and other areas that are playing up. I was going to hydrotherapy for a while with my physio and really enjoyed that; she gave me different exercises to do but she starts at 7am and I know it sounds like an excuse but it's too early for me as it takes ages to get dressed etc and then it depends if I can drive the car that day or not. I walk, not power walking, my dog everyday too, sometimes only short walks but today I felt good so it was a longer walk. I'd say the Prednisone is helping me a lot. Anyway I hope I have been of some help to you and maybe someone else can add their ideas too.
Take care
Gayl

Hello!
My names Heather, I'm 22 from Sydney 🙂

I was diagnosed with CRPS about a year or more ago after a skiing accident two years ago where I broke my knee cap.When I was taken to the ski patrol doctors I was told it was just a bruise and I went back to Sydney and thought I would just need a couple of weeks to recover fully. By day 6 I was really unwell and my sister dragged me to the GP and I had an MRI.... I was rushed to hospital and had surgery the next day... I had two surgeries on my knee cap, the first was putting a wire in and the second taking it out about a year later. I struggled with physio and getting my knee to move from the beginning of my rehab program but it was when I had the wire removed that the pain became out of control.

I was noticing different feelings of pain so my orthopedic surgeon referred me to a pain clinic in Sydney to help with my pain. I then got diagnosed with CRPS and was put on Gabapentin and endep to help minimize the nerve pain and to help get some sleep. I also began seeing a pain psychologist and pain physio which have helped a little bit, I also have been managing anxiety and depression for many years so it is interesting to work with a psychologist about different things but we also bring them all together. Unfortunately, I haven't been able to have a good go with the physio as each physio ( 3 so far) at the pain clinic has left after a few months so I have had to start over again with each of them.

In Jan/Feb of this year, I had a pamidronate infusion which went horribly wrong and I ended up in hospital for nearly a week from a reaction to the pamidronate... it was a horrible experience. I have had trouble with my pain doctor ever since as he has basically said that there isn't more he can do and I needed to manage my pain with the psychologist and physio. This was very hard for me to hear as I thought that he would have more options and It felt as though he was releasing me from his responsibility after the pamidronate situation. I haven't seen him since but I am looking to see a new pain doctor as my symptoms are increasing and I would like someone to help me with increasing my dosage or other options.

I have started seeing a chiropractor and we have been doing something called NET therapy... it doesn't take away the pain, but it has really helped me with coming to terms with the pain and that I am ok with pain and without it.

I get frustrated because sometimes it feels as though no one understands CRPS, a couple of weeks ago I was in the worst pain I have experienced. I was spasming and could not control my body... I went to the ER and they told me I need to learn to deal with it myself and he could do nothing as he was not a pain doctor... It was a horrible experience and it makes me sad that other people are probably going through the same thing.... But it's great we can come on here and have other people understand!

That's my CRPS, but I'm more than that.... I'm a singer, and currently studying music at university. I love movies and tv shows and cooking. I am obsessed with broadway musicals and just really love music. I have an interest in psychology and politics as well.

If you've made it this far congrats!!! Thanks for reading, it's nice to meet you all 🙂

Hi there Heather, welcome to the forum, I hope that you find some support and information as I have from here... the people are really helpful and have heaps of tips and ideas as well as emotional support that can be provided... I am from Sydney too - out west, where abouts are you ?

Hi Heather
Welcome. i hope that you will find the support you need here to help make each day just that bit easier and realise that you are not making this journey alone. There is also an amazing amount of information in the fact sheets and in the old forum discussions.
I also suffer CRPS as a result of having my arm crushed by a horse but after a difficult journey i am now managing it at a very low level of pain. Wish I could say that for the rest of the CP areas. :unsure:
Look forward to chatting.
Wendles

This is the third time I have been in abyss of chronic/accute agony. This is not a decent was to live. I am fil of empathy for you. Every one I see gives me a different diagnosis. I have has enough. This in unendurable. Thanks for reading peepe

Hi Lilac

Welcome to the CPA Forum 🙂

Please let us know your story. You will get all the support and understanding you need on the forum as we all know what you are going through.

Take a good look at the threads and information on here and I'm sure you will find something that will help you with your own journey.

Hope to see more posts from you.

Jo 🙂

Hi Heather and welcome,
There are lots of friendly, caring people here that will try to help and support you. Go ahead and ask questions and if you want to whinge/vent there is a forum for that too. Join in the conversations or just sit back and read.
Take care

Hi Heather,

Welcome to the pain forum we all tend to be pains whether it be visible or not we suffer and so do our partners , I think it funny that when we talk of pain and ourselves so many of us forget to offer thanks to our families , some of who offer more support than others.
If we are honest to ourselves when we are taken on this journey that none of us wanted to go on we all hoped that one day the trip we are on would finish,some of us lost the light and found help from the forum and we gradually found it glimmering and clawed our way back, I was one of those who lost sight of the light and was looking for the black dog to go home with but I recieved help from a lot of the people here and am fortunately am now able to offer help.
I note Heather you have an interest psychology I would hope you could study full time and be able to use your knowledge of CRPS & CP to help those who are not able to find the light .
I'll send you a note that I have found useful and have shared with others.
But welcome and search far and wide for snippets of info which could help.

Johnno

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.
In the spirit of informing those who wish to understand …
… These are the things that I would like you to understand about me before you judge me…
Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don’t seem like much fun to be with, but I’m still me– stuck inside this body. I still worry about school, my family, my friends, and most of the time – I’d still like to hear you talk about yours, too.
Please understand the difference between “happy” and “healthy”. When you’ve got the flu, you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please don’t say, “Oh, you’re sounding better!” or “But you look so healthy!¨ I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you’re welcome.
Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.
Please repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “concentrating”, “being sociable” and so on … it applies to everything. That’s what chronic pain does to you.
Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying, “But you did it before!” or Oh, come on, I know you can do this!” If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are–to be physically able to do all of the things that you can do.
Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it¨ may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, don’t you know that I would? I am working with my doctor and I am doing what I am supposed to do. Another statement that hurts is, “You just need to push yourself more, try harder…” Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.
Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now – it can’t be put off or forgotten just because I’m somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.
If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood, if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It’s definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.
If I seem touchy, it’s probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.
In many ways I depend on you – people who are not sick. I need you to visit me when I am too sick to go out… Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I have asked a lot from you, and I do thank you for listening. It really does mean a lot.
AUTHOR UNKNOWN
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TIPS FOR DEALING WITH PEOPLE IN PAIN
1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.
2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.
3. Pain can inhibit listening and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid.
4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much.
5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation.
6. Don’t always ask “how are you” unless you are genuinely prepared to listen it just points attention inward.
7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.
8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.
9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).
10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.
11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort.
12. We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized “disease”. That does not reduce the pain, – it only reduces our ability to give it a label, and to have you believe us.
AUTHOR UNKNOWN

Hi Lilac and welcome

Hi Heather
Welcome hun! I'm glad you found us. On this forum you'll be able to ask questions, vent or just read about other people who are going through similar things like you. I've only been on this forum a couple of months myself but there are 2 really important things I have learnt about the people here. The first is the unwavering support that they give and the second is that no one gives up. No matter how bad it gets they keep fighting.

If you continue with the forum, you will find yourself wondering how soon you can get back on 🙂
Cheers
Jacquie