Chronic Pain

[Guest_5461]

I don’t actually feel that comfortable posting here. I don’t have any major trauma inducing event or crippling mental disorders as others have described. I can, however, see my future in these forums as our savings and social support dwindle. I have been diagnosed with Chronic Regional Pain Syndrome which currently has no cure. It took a while to get A diagnoses and I have just surfaced with the help of a ludicrous amount of neuropathic pain killers beyond survival mode for the first time in three years.I'm lucky that I had a firm routine of mindfulness and journaling in place prior to this. When I was diagnosed I was immediately referred to pain specialist and a psychologist, but as I live in a regional town and mental help is practically non existent. I haven’t heard anything from the psychologist and as a “urgent” patient the pain specialist in the closest metro area will see me in February. The use of prescription pain killers is not sustainable.
I’m angry that the lack of regional health care means that a delayed diagnoses means I didn’t get appropriate care and I have little chance of recovery. I feel that I have no agency in my own health care, I’ve lost my ability to work full time and am quickly losing mobility. I would move closer to good health care, but I recognise I don’t have the Physical strength atm to make that happen. I fear for my relationship with my husband as he is both primary carer for me and income Provider. It’s not fair to him. I do not see myself willing being a burden on him, I don’t want him to be a carer, I don’t want him to be a frazzled man old before his time, tied to home duties, sick of the baggage that comes with dealing with someone in pain. At the same timeI can’t Imagine life without him. Selfish I know but I also personally don’t want to slowly die in agonising pain with no social support, At the moment I can’t see any alternative other than suicide.

[Billiee]

Firstly, please dont ever talk down what you are going through, it is just as valid or important as any other struggle. I am sorry to hear that this has been your experience, it truly sounds beyond hard but I want to acknowledge your courage in coming forward. I can understand how in this situation, taking your own life seems like the only means left. What I am hearing is that you are exhausted and feeling as though you have exhausted all your options. The situation with your experience with the mental health system is incredibly frustrating and unfair. Please don't give up. I hear you and I want you to know that someone out there wants to see you get the support you need and that i know is available.

I don't know if you know or have sought these avenues, but potentially applying for the NDIS would provide you and your partner with the support you sound as though you are seeking. Having NDIS funding will take the burden and pressure off yourself and your partner to organise everything. These services are available in all areas. The NDIA has a good hotline you can call and speak to someone to see your options. It gives you access to all health professionals who can provide F2F as well as telehealth options, funding for Support Workers, transport etc.

Change is hard, its a process of grief because you are slowly losing yourself and what you were previously capable of. I cant even begin to imagine your situation, but what you are going through and how you are feeling to me is a completely valid response to the amount of stress and pain both physically and mentally you are experiencing. The fact that you are reaching out and hearing everything you have tried up until now speaks to your strength.

[monkey_magic]

Hi Harpy,

Oh wow. Your story tugs at my emotions. Honestly I was feeling really bad about my situation and then after reading your story I realised others do infact have it harder.
Oh definitely some have it worse off than you. My mum works in disability support looking after people that were born with intellectual and physical disabilities, there are those that die young, get abused daily, in jail. Sorry this all sounds terrible and there really is no comparisons, but I think someone always is worse off. And I'm not discounting what you face everyday. At all. It sounds extremely unfair.

A little about me, you're right I'm no Mark, lol...I'm a 38 yr old female and yes I work casually.

My pain is what feels like nerve pain. It flares up when I walk. I used to put heat cream on it but now I just don't walk as much and honestly it rattles me. I'm a couch potato, or a sedentary office worker. It's so hard because my brain says one thing, body says another. I just want to be active like I used to but can't. This has also led to extreme weight gain, which I'm now trying to get off primarily through diet.

Sometimes the only choice you have is to be strong. You can crumble, or live for the things you still do have.

Sometimes it's a matter of simplifying life and being satisfied with the small things you have and can still do. It takes a lot to get there though.

[Harpbird]

Hi monkey, oh yes I definitely know there are many worse off.
I worked in a nursing home before being “ let go”. I loved that job and made many new friends with the residents and their families. My friend works with disabilities. She loves it too.
nerve pain sure is the pits, if it’s not stabbing , searing, burning ect ect ya go numb with pins and needles.

I too have become a couch spud, I have gained weight also . My youngest daughter brought me a fit bit for Xmas before last. And I have found it so helpful in keeping moving, and if I been sitting more than an hour tells me to grab water and get moving lol sometimes I even tell it to shut up. But even though the pain is bad I get up and walk around my verandah or to the letter box. I try my best to get my 8500, steps a day, dang hard too, at times it’s just not possible to do it.

It is so hard to lose weight when you suffer chronic pain. Sometimes impossible when ya can’t burn any calories. I hope you can win the war with your weight. It’s a constant struggle, just aim for any loss each month, aim small as it’s doesn’t seem as much ,even .200gms is a plus. I have been going to a weight loss group for nearly 27 years now. Every Tuesday Night I weigh in and learn new tips and at the meetings and have made some lovely friends.

your right it is the small things in life , just sitting here looking after my sick grandson is enough to push on.

[monkey_magic]

I'm glad you have reason to push on Harpbird.

My swimming costume finally arrived and yay it fits so I did some laps at the local pools this morning.

My back is feeling a lot better. I've had a back injury for a few years and sometimes I can only rest but I love my good days. Walking can agrivate it but swimming is much better. I also managed a Zumba class at the gym and made sure I did nothing to set off my back.

You're right about how the nerve pain feels. I thank my lucky stars I'm off that medication before it caused even more problems.

Feeling quite optimistic ATM because even though I can't do some things I used to do with ease I've found other things I can do.

With losing weight I find it hard to restrict calories but it's a mind over matter thing.

I like this saying: " I'm in control and not a helpless victim of food cravings or overeating".

I'm very good at giving into cravings and overeating. I'm trying to be more in control so the weight loss does happen.

That's excellent you have a fit bit and get your steps in. Despite everything.
Well done you!

[Harpbird]

Sure is getting harder and harder to push on .
monkey, that’s great news about your swimmers, I bet your chuffed and will wear it more often and so glad to hear your feeling better. I wish I could swim but have been told not to, though I am aloud to tread water lol.

I used to tell my self after eating ,I have had my meal, I have had my fill I don’t need no more . worked a treat lol .

I have been trying to drink more water, it’s so hard but seem to be easier when I buy 24 pack of bottled water, don’t know why but I drink it easier.

i had a good day with my mom today, though pushing her wheel chair around all day and in and out of the car , I am in for a long night .

[monkey_magic]

Hi Harpbird 🐦

Oh that's great you can still tread water. I do that at the end of some of my laps to break it up and for my flabby inner thighs.

Your talking to yourself after having your meal is a perfect strategy. I've been doing that too and it works. I've lost 4 kgs in a month.

Went to the doctor's y'day and he gave me anti- inflammatorys for my back. Walking was really hard y'day with my back injury and nerve pain in my feet. I managed about 30 mins of slow walking but it exasperated injuries. I should just stick to swimming. It made me feel bad then I saw somebody in a wheelchair without legs, which put things into perspective.

I find adding lemon, or lime to my water helps me drink it.

Glad U had a good day with your mum.

I could get injections again into my spine but I really don't like doing this and what if they slip up. Might stick to tablets for now.

I've now figured if I can treat my symptoms I might have a better quality life.

[Harpbird]

Hi monkey,

lol it’s so hard to tread water , so must help, I do doggy paddle as well.

Wow 4 kg is good in a month, well done.

Yeh the walking sets everything off but we got to do it, they say it’s good for us. Mmmm

Glad you got some anti inflammatorys and your getting a little relief.

I agree with the lemon in the water , makes it a little easier to drink and lime juice.

My mom doesn’t like me getting the injections, she said because they help my pain I end up doing too much Of what I couldn’t normally do and make matters worse.
So happy for you finding a way to get some relief, I really hope it lasts for you.
My pain in my feet have been bad today so I have pretty much spent the day on the lounge.
harpbird

[Harpbird]

Hope you all who suffer chronic pain are doing ok and keeping on top of those flare ups.

All the calling I have been doing and finally got the He said , she said answer. My Pain specialist needs a new referral for the year , why beat around the bush, I sent forms to GP , GP has not received, I resend , didn’t receive, oh doing my head in. Got results of my report, got cervicothoracic scoliosis. I have spondylosis In all the levels causing stenosis in neck and lumbar. osteoarthritis in shoulders, , well I knew that. says my feet have a lot of uptake of the tracer but not reason why but hey on the up side knees are fine Whoo hoo. So seeing GP on Wednesday to pick up referral and will drop back into pain specialist to start injections again. Phew