Angry - Frustrated and low!!!!

saggyoldbagpuss

Am soo angry right now :x , been to see my doctor today following good advice from kind/caring people on this forum. I asked if they could help me with my pain as the painkillers I’ve been prescribed aren’t helping especially at night! I can’t take anti inflammatory either (stomach) so currently use Voltoral and still I wake in pain especially hands during the night………

Doc's response was that I needed to wait for my next appointment with rheumatologist at the hospital they will deal with painkillers i’m to hold off until then - Arghhhh! That’s "October" for heaven sake..... :shock: ....

Am really low, I've had several bad experiences with NHS and I never feel safe or reassured. It took me over 18months to get someone to listen to me before, finally in Dec 2000 I insisted they remove a lump that was causing me soo much pain. On 19/12/00 I had a lumpectomy on my left breast cant say how relieved I was to get rid of the pain xmas was great although a little sore.

I thought no more of it! Then the hospital called me back on January 6th 2001 to inform me that I had a rare form of breast cancer..... All that time they kept telling me its hormones - try this! Try that! Kept dismissing me and making me feel like I was wasting their time. Why do they do that?

Took me years to get over that! So much surgery ended up loosing both breast in the end. Well after that I decided that was it – I’d had over 7 years of surgery and now it was over I was going to live life to the full. So started running, ran for charity and raised thousands. Also did triathlons they were really great fun . I was sooo active - if a day went by without me running or cycling then I felt as if I was missing out.

Then BANG last year in July after my last triathlon my recovery (normally a cple of days) just didn’t happen and since then I’ve been getting worse. Now I can’t run because my feet are too painful I get soo tired and my body - well I feel like i'm carrying ten ton on my shoulders...... Why me?

Why won’t they listen to me - why do I always feel like I have to shout from the rooftops to be heard?

Am sorry but I needed to rant, I just want my routine back - that feel good feeling and a doctor in whom I can trust

dippydoodah

saggyoldbagpuss wrote:

Am soo angry right now :x , been to see my doctor today following good advice from kind/caring people on this forum. I asked if they could help me with my pain as the painkillers I’ve been prescribed aren’t helping especially at night! I can’t take anti inflammatory either (stomach) so currently use Voltoral and still I wake in pain especially hands during the night………

Doc's response was that I needed to wait for my next appointment with rheumatologist at the hospital they will deal with painkillers i’m to hold off until then - Arghhhh! That’s "October" for heaven sake..... :shock: ....

Am really low, I've had several bad experiences with NHS and I never feel safe or reassured. It took me over 18months to get someone to listen to me before, finally in Dec 2000 I insisted they remove a lump that was causing me soo much pain. On 19/12/00 I had a lumpectomy on my left breast cant say how relieved I was to get rid of the pain xmas was great although a little sore.

I thought no more of it! Then the hospital called me back on January 6th 2001 to inform me that I had a rare form of breast cancer..... All that time they kept telling me its hormones - try this! Try that! Kept dismissing me and making me feel like I was wasting their time. Why do they do that?

Took me years to get over that! So much surgery ended up loosing both breast in the end. Well after that I decided that was it – I’d had over 7 years of surgery and now it was over I was going to live life to the full. So started running, ran for charity and raised thousands. Also did triathlons they were really great fun . I was sooo active - if a day went by without me running or cycling then I felt as if I was missing out.

Then BANG last year in July after my last triathlon my recovery (normally a cple of days) just didn’t happen and since then I’ve been getting worse. Now I can’t run because my feet are too painful I get soo tired and my body - well I feel like i'm carrying ten ton on my shoulders...... Why me?

Why won’t they listen to me - why do I always feel like I have to shout from the rooftops to be heard?

Am sorry but I needed to rant, I just want my routine back - that feel good feeling and a doctor in whom I can trust

Hi Bagpuss
Im so sorry to hear you're going through such a hard time at the moment. It sounds like you've been through enough already without the stress of trying to get doctors to listen to you and help with your pains. It's so fustrating when they just tell you to 'wait a bit longer' or just to take extra painkillers. I was told to take paracetamol but had to go back to my gp and make him give me something stronger. I took my husband with me for support.

Im reletavely new to all this myself so Im afraid Im not much help sorry.

Rant all you want. It's annoying that we have to shout and scream to get someone to listen. It shouldn't be that way.

I hope you get some answers soon, sorry I cant help.
Caroline x

saggyoldbagpuss

Hi Caroline

It feels good to rant sometimes! thankyou for listening!

wish you well
Take care
Michele X

robertls

Hello Michele.....

Cricky you been through it haven't you....

Luckily I had a very good medical team supporting me, they are out there, but it sounds like you've drawn a duff lot.....

Getting anyone to listen can be difficult.....and your lot certainly don't seem to..

We'll try and give you all our help and support......

Keep posting.........I can and does help......

Rob x

dreamdaisy

You poor thing. It shouldn't be hard to get a doctor to listen, but sometimes it is. I feel for you, this is the last thing you need. Is it possible to change your practice, or see someone else? Thinking of you. DD

speedalong

Hi Bagpuss, no wonder you are lacking faith in the NHS.

I would definitely try and see a different doc in your practise or consider changing surgeries ....

In the meantime, make another appointment explain you can not manage with the pain, make sure you emphasise about being unable to sleep and request that if the doc can not help you want a pain clinic referral and your doc to request your rheumy appointment is brought forward ...

Speedy

Wonkylegs

Have you thought of ringing the Arthritis Care Helplines people to get some advice on how to deal with this?

they open 10 am - 4 pm (number at top right of this page)

I know they have helped others with how to approach GPs in a way that can help get results.

good luck

wonky

dorcas

Michele...
so sorry you've had such an awful response from your doc :roll:

you've had such a bad time with cancer too but must have real inner strength and determination to have come back from that fighting and then raising so much for charity.... I am truly in awe of what you achieved. :!:

don't let the setback with your doc stop you now..... you cannot and should not be left to cope with such pain until October!

do as other peeps have suggested and either phone and see a different doc in the practice or register with another surgery.
You could also phone rheummy outpatients and ask for a cancellation appointment or to have your appointment brought forward.

please let us know how you get on .

Iris x

whitey44

Hello Michele

Sorry to hear you are having such a hard time at the moment :!: :idea: Call the hospital and ask for your Rheumy's secretary; explain to her/him that you would like your appointment to be brought forward because you are really suffering and your GP is unable to help!

Hopefully your Rheumy will understand your plight much more than your GP. Hope this will help! You are a fighter so keep on fighting :!: :!: :!: :!:

Pure wishes & love

Whitey

livinglegend

The problem is that your diagnosis and care is now controlled by your consultant and your GP won't interfere with his or her decisions.

This means that only the consultant can decide on changes to medication. You should have been given a contact number for the Rheumatology Team in case of problems. Look up the hospital where your consultant practices online, to see if there are any contact numbers for the Team and phone them for advice.

If not, then phone the hospital's general contact number and ask to be put through to the Team's extension.

Joseph 8)

valval

livinglegend wrote:

The problem is that your diagnosis and care is now controlled by your consultant and your GP won't interfere with his or her decisions.

This means that only the consultant can decide on changes to medication. You should have been given a contact number for the Rheumatology Team in case of problems. Look up the hospital where your consultant practices online, to see if there are any contact numbers for the Team and phone them for advice.

If not, then phone the hospital's general contact number and ask to be put through to the Team's extension.

Joseph 8)

this does work did it with mine and saw nurse who arranged blood tests or doc can suply consultance secuterys number good luck val

angie1973

I'm so sorry you are suffering so much. I've said this a lot before, but it's truly hard for someone not in pain at the time to understand just how awful and debilitating it can be and how it overrides every aspect of your life if it's not under control.

You get pain, you don't sleep, you don't sleep, the pain gets worse because your body is tired. You need sleep to repair, and I know how lousy it is not sleeping. I get 2-3 hours on a good night and some days I am not sure how I get out of bed and go to work.

I know it can be hard to change doctors too. In our area, you have to live in the area to register at a practice there and once you do, you can't change to another practice unless there is some very serious reason for doing so. My doctor was great at diagnosing and getting me to here, but useless at anything forward from this.

You do so much, you have come through a heap of trauma, you are a strong and defiant person. I hope they realise this and realise that you are not asking for pain relief because you are wimping out here, you NEED some pain relief.

It's a basic human right not to have to be in pain. They wouldn't let a dog suffer the way we do sometimes, it makes me angry.

I hope you get some pain relief soon.
Gentle hugs
Ange..

carola

I am so sorry to hear of this.

Harness that anger and use it to get some answers.

Although we are not doctors we DO know our own bodies and you proved this right with your experience regarding your lump - you chased and insisted and thank goodness you did.

Do the same regarding pain control. Call your Rheumatology department and ask to speak with the Rheumy. Failing that speak to the Rheumy Nurse. After my 1st Rheumy appointment they tried to make me wait 9 months for my next one. I called and called and got an appointment within 2 weeks and now see them every 2 months.

I'd also say, call your GP practice and make an appointment with another GP just incase he/she will get involved.

It is disgusting that you have to battle like this and I wish you luck and positive healing thoughts.
Carol