The feeling of having to do everythin... - Lung Conditions C...

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The feeling of having to do everything yourself, looking up Medication and telling the Doctor. Ringing up nurses etc.

superblackbird profile image
25 Replies

Everything is not easy to access. The course for COPD Rehabilition is 6 weeks long, but in my area they are doing every 3 months. I have to wait till the 19th August to start my course. I am having a COPD Clinic at the Doctors though on the 26th, To access my breathing etc, to see on right medication or need a different one. I've got problems with my knee after an accident years ago. Where I discolated my patella. I have got nerve damage because of this and am in continualy pain. They are trying to get me off Tramodal because it addictive etc. I looked up alternatives and I found Duloxetine. I told my Doctor, so he is weaning me off Tramodal and gradualy putting me on Duloxitine. I shouldn't have to do this. The Doctor should no and do it without me asking.

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superblackbird
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25 Replies
Swizzy profile image
Swizzy

so true superblackbird. It is mentally and physically exhausting.

Difficul profile image
Difficul in reply to Swizzy

I agree. I have learnt so much about my COPD from this forum.

superblackbird profile image
superblackbird in reply to Difficul

All stick together ❤️❤️

superblackbird profile image
superblackbird in reply to Swizzy

yes it is 🐦‍⬛🐦‍⬛

superblackbird profile image
superblackbird in reply to Swizzy

yes it is 🐦‍⬛🐦‍⬛

Nula2 profile image
Nula2

Hi superblackbird, yes as kind and caring as everyone I see at my hospital and surgery is, I am learning that Bronchiectasis is the same. I think I've learnt more about it through this forum with all the kind and supportive members than I have elsewhere.

superblackbird profile image
superblackbird in reply to Nula2

Its a great learning experience so we can look after Ourselves, and pass on the knowledge to other people who need help on here 🐦‍⬛🐦‍⬛

Nula2 profile image
Nula2 in reply to superblackbird

Yes I feel lucky to belong to this forum 😊xx

Dottie11 profile image
Dottie11

100% agree with everyone comments. xx

Caspiana profile image
Caspiana

Hello there. I have heard from my relatives in the U.K. how they continually have to chase things up. It's not easy especially if one is in pain and feeling lousy. I am sorry to hear your dilemma. Although I can see my doctors regularly here in Japan I often ask them and at times give suggestions for my treatment. I feel like we all must advocate for ourselves. Doctors although many are brilliant at what they do, have so many patients, being human, it probably helps them (and us) to give them some ideas too. So good for you for taking that initiative!

As for rehab not starting until August, if you go on YouTube you can find many videos that feature chair exercises for COPD patients. Maybe you could get a head start. I hope you had a good weekend! 🤗

Bevvy profile image
Bevvy

I think you’re being a little unkind about your gp. The idea is they are general practitioners and as such of course cannot know everything about every ailment.

18 months ago I had to have an emergency spinal operation and as such can now add spinal cord injury to my various medical conditions. People are amazed about the amount of services I am receiving. Well yes I am but that is because I did the research myself and asked for things. I have been prescribed all medications that I and other medics have asked for. Was referred quickly to a spinal hospital and even found out best way for the referral to proceed. In this day and age I believe people have to take some of their own responsibility and find answers if they can.

Finally though I want to say that I am on duloxetine and find it extremely helpful for my nerve pain. It was recommended to me by a specialist nurse and I asked gp for it. He was surprised because he was unaware it could help with nerve pain but nevertheless prescribed it and I respond well to it. I also take some Tramadol at night but doctors and consultants are happy with that.

I hope that with whatever medication best suits you it can help you have less pain and be able to move easier.

superblackbird profile image
superblackbird in reply to Bevvy

I'm afraid I'm not being unkind. Our surgery is under investigation by the authorities. One Doctor had to leave. They are precribing wrong medication and not giving the patients the care they need. They cant precribed Tramadol, it is checked first by the authories and then it is precribed. Hopefully Duloxetine will work for me and maybe i will stay on Tramadol at a lower dose. I will have to wait and see. take care 🐦‍⬛🐦‍⬛

teddyd profile image
teddyd in reply to superblackbird

Have you thought of moving to another surgery. There are a lot of very good Drs and services out there. I often ask my Gp,respiratory nurse or consultant about things I have read about and we discuss the pros and cons.

beech profile image
beech

I agree with you, superblackbird. I learned some years ago that I’m my best advocate, especially as I’m the one it matters to. It does take conviction and courage to ask for treatment, or to change a medication. As long as I feel listened to and not dismissed I’ll keep at it.

I have close hand experience of duloxetine being prescribed about 15 years ago for my mum’s neuropathic pain, when she’d exhausted everything else, and this was a new idea. Luckily an open-minded neurologist agreed, and it really was good for her. I hope it works for you 👍😊

superblackbird profile image
superblackbird in reply to beech

Thank you 🐦‍⬛🐦‍⬛

Butterbemine profile image
Butterbemine

I know that feeling! My GP does not action requests for medication change or referrals for investigations from my rheumatologist and other disease specialists. I have made 3 complaints (one ongoing) and nothing changes despite previous complaint being upheld. I feel as if I have to constantly fight for everything thing - I'm exhausted and depressed!

kev60 profile image
kev60

Hi, good to hear you are getting PRehab , I had a two year wait on referral then had a telephone consultation (passed this) , then got my appointment for a months time. When I turned up , they had observed me entering the health centre and told me I could not do the rehab as they deemed it to dangerous and I may hurt myself and others. I was hoping for alternative therapy but nothing has been suggested as yet. It seems to me that they seem to be pushing remote access, having my COPD review tomorrow over the phone again, I find when it’s face to face they can tell a lot more also they ask how you are. Good luck in the meantime. Kevin

superblackbird profile image
superblackbird in reply to kev60

They are all trying remote or phone which I think is bad. Face to Face is always best. Have they sent you any exersise for at home ? I've been sent some. Stay strong and take care🐦‍⬛🐦‍⬛

Izb1 profile image
Izb1

We do have to be proactive in looking after ourselves especially now. If I had waited for the NHS to get my hip done i would still be waiting. Yes its exhausting especially when not well but keep chasing and suggesting it is after all for our own good x

Homely2 profile image
Homely2

Have a look at doing the asthma UK breathe easy programme, it is online over six weeks.

Eastend555 profile image
Eastend555

Back in the day Doctors were quite different as you know.

Today they dont seem to care

If your old what chance you got

Dont make a fuss just die seems to be the attitude

superblackbird profile image
superblackbird in reply to Eastend555

Well your not going to die. You stay strong and care for yourself xx

teddyd profile image
teddyd in reply to Eastend555

I am sorry but I totally disagree with you. I am old and get excellent treatment from the NHS. Back in the day people died from illnesses that they now have treatment for. I dont get treated any different because of my age.

deejames profile image
deejames in reply to Eastend555

I would disagree. GPs now are hopelessly overworked and underfunded. They now have to deal with many more people with multiple conditions and an increasing number with mental health issues. My experience is that 90% are caring and compassionate most of the time. I say three cheers for our NHS

Eastend555 profile image
Eastend555

thanks

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