How To Get This Sorted

[emmie]

finally resorting to a complaint to the senior doctor, however this is not what i want - neck bone pain right down to lower back, spinal pain that has now gone out of control, constant pain in both hips, knees, and buttocks which is the worse of the pain, like sticking needles, glass in the whole of that area, so sitting is an ****** nightmare, standing, walking isn't any better, taking pain meds paracetamols, naproxen but it's not doing much. after six months like this, its become so dire that i have lost the plot. I have had other things come into play all this while, not least the weight loss, which has been significant. I am still waiting for the scan that was promised, i am having to do the chasing all the time, rant i suppose, sorry, just can't cope anymore.

[ummmm]

I don't know what to say but it sounds horrendous.

I get all teary about period pains so you do have my deepest sympathy....

Pain is depressing but I'd be quite concerned about your weight loss.

[Old_Geezer]

Sorry emmie. Hope you can find some kind soul to do your chasing for you. For I'm sure the NHS does no more chasing other than that which they can't avoid.

[Mamyalynne]

This has now become all consuming and I don't blame you for feeling so low - significant weight loss is a worry too, at the very least scans or whatever is planned must be done ASAP.

I hope you get somewhere very soon Em.

[emmie]

i have told them, i feel completely wretched. One doctor doesn't think it's anything so serious to send me to hospital, however no pain relief has worked. They don't examine you anymore just refer you onto someone, which takes time, so you can be in this nightmare for an age, as been proven. I can't see the end of this at all, that thought alone makes me want to scream.

[grasscarp]

Have you had a diagnosis of what is wrong?
Could it be this
http://www.nass.co.uk/getting-my-diagnosis

[emmie]

no i haven't, and for no reason can explain the nerve tests have had done have not included so far the spine, back, and still waiting a month on for results of x rays from neuro team, as said i am the one doing the chasing the whole time. The pains in the buttocks, back is horrendous, no other word i could use for that.

[grasscarp]

I hope the complaint to the senior doctor will lead to something. I dont know what I would do in your situation. Maybe change my doctor if they were not taking it seriously? You need to know what it is that is causing this so you can be treated. I just googled the things you had said were causing pain and came up with Ankylosing Spondilytis. I posted the link so that you could see if that were a possibility.

[Brenden]

Em have you had an MRI scan? - if not demand one. Feel for you.

[penelope2]

A letter of complaint to the CEO of your local NHS Trust is the best way to get results in my experience.

[emmie]

Grasscarp, no idea, Brenden it's what i have been waiting for. Burning sensations are so bad no where to sit, stand without it, i absolutely hate it.

[grasscarp]

Here is a list of symptoms
•Slow or gradual onset of back pain and stiffness over weeks or months, rather than hours or days
•Early-morning stiffness and pain, wearing off or reducing during the day with exercise
•Persistence for more than 3 months (as opposed to coming on in short attacks)
•Feeling better after exercise and worse after rest
•Weight loss, especially in the early stages
•Fatigue or tiredness
•Feeling feverish and experiencing night sweats

[chelle7272]

I feel you for you emmie, constant pain is so draining and the weight loss is a worry.
I would complain to the practice manager as well as the senior doctor. I would ask for an immediate response or you will take it further. That would be the local CCG (clinical Commissioning group which replaced the trusts) or NHS England. Contact details for them all can be found through the NHS site. There are local PALS (patient liaison) services which you could access, I've heard varying reports about how good they are but they could at least provide some support so you don't feel you are battling away on your own. I hope you get this sorted out soon.

[emmie]

mine,
foot pain, burning sensation underneath and top
into the ankles, burning sensation into leg
neck bones very stiff, can't move left right without pain, radiates
down spine into the coccyx which feels as though am sitting on it
and the pelvis, lost weight from buttocks, legs,
excruciating pain in buttocks, like sitting on glass, needles
lower back pain radiates out to both hips, knees, burning sensation, can't think of another way to describe that.
no pain relief has helped and tried different things.

[emmie]

i am unable to do any kind of exercise, walking has become very difficult, at least without pain in both back, hips, knees.

[pixie373]

Emmie, I'm sorry i can't help, but i think you're going to need to just continue to push them. I'm not surprised you're struggling living with this for so long. Make a complaint / threaten to/ change doctors... This really isn't fair. Hope they sort it soon xx