Lost, scared and still in pain!

Stayfocused

(Apologies if you've already read bits of this as I have posted it in response to a question. The reason why I've posted again is because I've woken up this morning in agony and I don't know what to do)?

It's been a while since I've been on here as I've been getting on with my life because I was managing really well! However, things have taken a dramatic turn for the worse and if I'm honest with you I'm lost, scared, in severe pain but mainly ANGRY!!!

I found out something was wrong in December 2005, i was 27, something still is wrong but to this day I've never been given a diagnosis. Well not a concrete one anyway. My consultant has, for the last 7 years, said I've got 'inflammatory arthritis' I'm on methotrexate, sulfasalozine, cocodomol 30/500 and until two wks ago naproxen. (Had to come off naproxen because it's caused stomach ulcers -great)!! Major flare up with nothing
given to replace it-hence increased pain.

Since last January I've had increasing hip pain which I informed my consultant about. He examined me said my movements were good said I'll see you in 6 months and that was all. Six months later even more hip pain and additional back pain, I saw him again, your hip movements are good there is nothing much I can do. I asked for an xray-it came back normal. He left me another 6 months (during which time I was on and off crutches, had no life and was in immense pain and kept being ignored by my consultant (rheumatology nurses tried to intervene but nothing came from this).
Just before Christmas last year, I came down with pneumonia and was Ill for 10 wks, I was on crutches in agony with hip pain (both hips now) back pain and really depressed. I put my other hip and back pain down to compensating for my right hip! I rang the rheumy nurses in floods of tears explaining my situation, they managed to bring my appointment forward and I have since seen a physiotherapist for hydrotherapy, I was in that much pain on my first session I couldn't get in the pool. The physio, who is a gem, wrote to my consultant explaining her findings and stated that an MRI scan may prove beneficial, something which I asked for approx 13 months ago-it's not warranted he answered when I initially asked. Within a week I had seen him and within a few days of this an urgent MRI was done. The findings (which I think is why I'm so lost, scared and angry) were moderate degenerative changes in my original painful hip, moderate degenerative changes in my good hip and moderate degenerative changes in my lumber region. I've only just stopped crying, my scan was on Monday and I still can't grasp the findings.

Why did he not listen to me when I first complained of some discomfort in my hip?? Why did he leave me in pain for 14 months??
I started to think I was imagining it all before these results came though. Bitter doesn't quite cover how I feel.

Any advice appreciated x

barbara12

Hi Stayfocused
Bless you are in a bad place, its so hard getting GPs and consultants to take us seriously, part of that is they dont feel our pain.
You say your back is painful, I have OA in my back and hips, at the min they are trying to find out where most of the pain is coming from, my hips on Xray shown bone on bone, but yet I have the movement.
I am glad you get the MRi scan it does show up far more than an xray,
I was in your position a few years ago, but that was down to my GPs,
If you had found out earlier the treatment would have been the same, but I do understand how awful it is when you are not believed and start to think it is all in your mind.
You could write a letter of complaint to the hospital, not enough of us do this.
I really do wish you well with everything, and dont forget we are always here for you to talk to..sending you loads of hugs ((((()))) xx

pinkbritishstars

Hi StayFocused

how are you today? Have things improved at all for you?

I know how you feel Naproxen caused my stomach and duodenal ulcers but I've had to go back on it as my arthritis is bad at the moment and it helps with the inflammation.

Hope someone listens to you soon hun.

Keep talking to us WE understand how you feel.

Hugs

Pink xx

stickywicket

Hello Stayfocused. I picked on on the 'lost, scared and still in pain' thing when you replied to Green9378. Not wanting to hijack his thread I started another one as a reply to you. If you scroll down you'll find it. I hope it helps a bit .

dibdab

Just a thought, but does your hospital have a Patient Liaison service? The PALS at our local hospital were wonderful in helping me when I needed a change of consultant, but that's a whole other story. They can help with making complaints and talking through the way forward.

Hope that you get the right help soon, keep talking to others, it's what gets us through the desperate bits.
Blessings
Deb x