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How do you cope with cp and chronic fatigue?

  • Eliza
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5 years 5 months ago #12471 by Eliza
Eliza replied the topic: Re: How do you cope with cp and chronic fatigue?
Thanks Kate, I was thinking about you earlier when I read your posting about norspan!

I've been seeing someone for 4 years under that act and recently a pain psychologist though they are few and far between with her holidays and me awaiting approval. I'm very familiar with CBT because I worked for allied health for 15 years. I hoped to return to work though my pain levels and immobility is restricting me so I was put unfit for work. I have too many restrictions on my medical cert...

I hope your infusion goes well and you get some relief...

Hugs Eliza

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  • grappers
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5 years 5 months ago #12473 by grappers
grappers replied the topic: Re: How do you cope with cp and chronic fatigue?
Eliza you are going to get people who are judgemental all your life and we seem to cop a whole lot as soon as CP is mentioned, don't let this sort of attitude put you off, it doesn't matter what they think, it's you and how you are dealing with pain that matters, when you do get into the course they will have a section on how to deal with this sort of behaviour.
The course may seem a long way off while you are feeling this way, so please try and see your pain psychologist a bit more while you are waiting, to start working on some of these negative thoughts and feelings that are going on at the moment.

Take care hugs Don

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5 years 5 months ago #12478 by hopeful_kate
hopeful_kate replied the topic: Re: How do you cope with cp and chronic fatigue?
Ah, yes I learnt about CBT at uni because I did psychology (before later deciding I wanted to be a teacher instead) but its a totally different experience when you're talking about YOUR thoughts, your feelings, your emotions... I'm sure you know this too but I also recommend you try and see your psychologist more often. I was seeing mine weekly in the early stages and it really helped - caught when I started falling off the train tracks, not when I'm in a big mangled
mess and can't stop crying! I don't do much crying anymore even though the pain is worse than it was to begin with.
Of course it's all easier said than done and I'm nowhere near where I want to be psychologically, however certainly not in the 'life isn't worth living' state anymore... X

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5 years 5 months ago #12480 by Outlast
Outlast replied the topic: Re: How do you cope with cp and chronic fatigue?
Hi Eliza. Not much chance of me saying something brilliant to lighten your world but you said yourself maybe you should go back on Avanza. If you took the very average dose of 30 mg I fail to see how you would be knocked out next day. The minumum is 15mg so why not break one in half.
Work"mates". i worked with them for 15years. Not once did they show any positive emotion at all. Bastards every one of them. The day i left i changed my phone no. and cut any possible ties. Don't want to think of them and generally do not. If you gave your mind a bit of a rest from all the negativity that is bombarding it, either by Avanza or meditation/relaxation or a 6 pack of pineapple cruisers or a combo of all then that would be a good start. You know i live alone so i do know the traps of living by yourself when ill. You have to give your head a rest Eliza.
Just to reinforce why i love living alone. THIS IS TRUE. As you know a month ago i had a heart attack. No surgery needed because it is micro something or other with small arteries in spasm blah ,blah. I have 3 brothers. 2 haven't seen in 40 years. Other one drops in twice a year. Yesterday. I didn't tell him about heart attack but he saw paperwork on fridge. Wait for it........All he said was "where is your will and where are your burial details?" I kid you not that is exactly as it happened and in that order.
Tomorrow i see solicitor and he loses three hundred thousand big ones. For every action there is a reaction.
On topic of judgemental people. It is hot in Melbourne and i often don't wear a shirt. Try not to visualise that. Anyway i wear 2 Norspan patches. I have good neighbours but i am sure they think i am a malingerer. Lately comments "oh i see you are trying to give up smoking" " no i say. It helps me with chronic pain". "oh i didn't know you had much pain." I guess the years of backbraces and neck braces must have been a ruse. Damn.

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5 years 5 months ago #12513 by BIY
BIY replied the topic: Re: How do you cope with cp and chronic fatigue?
Hi Eliza,

Hope you're feeling a bit better today. It is an exhausting journey this CP ride full of ups and downs and sometimes the many and accumulated downs can really get to us. I know, at times, they do for me also.

It can also seem like things would be much better if only we had such and such in our lives. I know I have been guilty of thinking that others on the forum are so much luckier than me because at least they can 'talk' and chat with people to distract them from their pain, whereas, with my jaw problem, that is not an easy option for me. However, the grass can always look greener on the other side and I bet, to members who have trouble walking, it may seem like I'm better off because at least I can do that, if you see what I mean.

I have a friend who has had CP for many years and she said to me that she didn't know how I could cope with being in a relationship while having CP. She was really grateful to be on her own because she didn't have to consider the needs of another person in the house and could just do whatever she needed to do for herself to get herself through a CP flare up without having to consider anyone else.

So I suppose it depends on which angle you look at it from. There are things that I need to deal with that you don't even have to consider such as guilt that my CP is having such an effect on someone else's life, that there's things he'd like to do and places he'd like to go that my CP stops, that he doesn't have an equal partner but rather falls into the carers role when my CP is bad. These are emotional burdens that I carry being in a relationship and having CP...not to mention the loss of self esteem in being able to contribute equally to the relationship. We had only just moved in together when I had my injury and now the poor guy can't even sleep with or kiss his wife cos of her CP sleeplessness and jaw problem. (Yes, one of the biggest flare ups I've had was caused by trying to kiss :'( )

While there are good sides to having a partner, even still, having a partner does not stop me from experiencing the physical pain, fatigue, depression, sleeplessness or distress in dealing with wc issues while having CP.

While I'm down in the pit of despair going through a 'stuck in the pain cycle' period, there's nothing my husband can do or say to get me out of that. That has to come from within my own self.

I can relate to your CP fatigue after I've just gone through a long period of flare ups in the 2nd half of last year, plus the court case that was adjourned, and the upcoming conciliation this January for the botox treatment that the wc insurance agent is threatening to discontinue.

I realised that I was falling further and further into the pit of despair so knew that I needed to do something to change the dynamics. Going to my GP and finally agreeing to try the Norspan was one step (I have resisted trying heavy duty opioids til now because of their dependence potential and my sensitivity to medications). And the other thing was just trying to make really small changes in my day e.g. instead of eating breakfast in bed then finding it really hard to get out of that bed because of depression, eating my breakfast on the couch in the back sunroom so I can see the garden (can't see the weeds from this angle lol!). And picking up a novel instead of turning on the tv. Just one little bit of housework. Just little changes, but they are helping to break the pain cycle rut I have been in. A bit like eating an elephant one bite at a time. I had been considering paying a cleaner to do a once off spring clean if my husband hadn't done it. But it's also about being flexible and compassionate with yourself on the days your body needs to rest and having acceptance of that instead of fighting it as my psychologist would say...yes, something I have struggled with coming to terms with myself.

My husband works an hour away from home and works long hours, plus plays in a band at weekends. His elderly dad is suffering from Alzheimer's too so he is out a lot visiting him. This all means that I am home alone a lot too.

Just wanted to present another side to the picture cos it's not always as rosy on the other side as it would seem and it still comes back to us alone being responsible for taking the steps that we need to take to move forward.

One thing with the Avanza; less is more so the smaller the dose, the higher sedation. So one tablet is less sedating than say a quarter according to a psychiatrist I used to see. If the Avanza in general is too sedating even at one, perhaps visit your GP for suggestions of another kind rather than just stopping at a time when depression is strong. There you go; perfect example....I wish I could take an antidepressant to help with the depression and sleeping patterns, but I can't because of adverse side effects to the many different types I have tried! I could get really stuck in feeling bad that I can't take them while others can, but that wouldn't help me at all.


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