Don't believe all my pain is due to pain syndrome

[natherly]

I have been diagnosed with a chronic widespread pain disorder.

I am ok with working on the assumption that the pains in my body and back and tingles in my hands, feet and lower back are caused by this.

I am not convinced at all that its the cause of the pain in my left leg. The pain there has been getting worse for a decade, and pre-dates all of the pain I started to get last year.

Its the most disruptive to my life and my mood - I am half awake in the early hours of every morning, rolling around in agony trying to find the least painful position to lay in to try to get back to sleep. Its very painful when I get out of bed, and gets better through the day - mostly - sometimes I am still in pain when I go to bed.

I think the pain is in my femur bone. I have full mobility despite the pain and my nerve reactions are all fine. Painkillers seem to have no effect. I have been trying to ignore it but its honestly impossible. I have been trying to reassure myself that its just chronic pain but it makes no difference. The pain levels definitely aren't linked to my mood.

I don't feel enough has been done to rule out a medical cause of this pain - and I feel hopeless because I'm stuck with a leg that won't stop hurting and won't let me get a good night's sleep.

Has anyone managed to get doctors to see past a pain syndrome diagnosis and investigate further? I'm thinking of getting it x-rayed privately but can't really afford it.

To make matters worse, I have started to get my big headaches again and if they continue, there is no chance of having them investgated now I have been convicted of - sorry - diagnosed with - a pain disorder.

[Iliketojugglejuggle]

Hello there, I’m very sorry you’re going through this. I’m going through something similar with my right leg. Did you ever have an injury to the leg? How did did the pain start? If it’s been an ongoing problem for years sounds like could be some kind of arthritis or there was some injury to the nerves. If it bothers you at night more, bigger chances of it being a nerve issue.

In my experience once a doctor makes a diagnosis they are very reluctant to change it, probably to due with money and insurance as here in the US they bill it based on diagnosis. They could add a differential diagnosis, for instance one of my doctors literally gave me 7 possible diagnosis once, but when I asked which one is it they couldn’t tell me since I didn’t check all the boxes for a single conclusive diagnosis. I know we as patients want a definitive or unanimous diagnosis, but sometimes there just isn’t one mostly because doctors only practice medicine, very few if any fully know and understand it.

[TiredRose]

I understand; to ensure all bases are covered if you have a 'diagnosis' (label) already attached to you, a chance for lateral thinking and a picking-out of the root cause is not easy. Nowadays, to be 'visually' and 'subtly' assessed by a medical profession - in hospital or Surgery - should be the opportunity to let them truly see and hear you. Whether there is a quiet/unhurried space - metaphorically and within the four walls - is the gift that the NHS struggles to provide. I'm under a Trauma Hospital following an RTC; the best 'listening' has happened in i) the Hand Surgeon's room; she has an intense interest in her specialty and getting the best from the meeting with soft piano music emitted from her iPhone to set a calmer atmosphere and ii) with the Radiology Technicians. The worst offenders are the GP Surgery, who have not played their part at all, no coherent link-up, indeed, no care at all for a severely injured person trying to improve on the backdrop of Covid and the ongoing strain of the NHS ... so that now despite 'my battle' it is my body that is rebelling with CRPS2 and Urgent referral to a Pain Team needed (awaiting appointment).

Keep going with your instinct, if something doesn't feel right in your body and it is bothering you. We all deserve to be heard if we are in pain, so that we can deal with whatever or not it is and move on to live independently again. Who wants to see a Doctor anyway - not me - I'd rather eat an apple a day!

[Dancer2021]

Hi, I'm so sorry to hear you are suffering. I too have a similar diagnosis which I don't accept. I can't be in pain for no reason, they just haven't looked hard enough.

I've tried going private and hit the same brick wall. I am under the pain clinic and on a 7 month waiting list to have an injection for 'visceral pain'. You wouldn't make an animal wait 7 months in pain!!

Meanwhile I try to live and hold down a job as without a proper diagnosis you can't claim disability.

[Batty1]

Why doesn’t your doctors do a X-ray or MRI? When you move your hips or legs do you hear a grinding or popping?

[strongmouse]

When I have seen a GP who hasn't listened properly to my concerns I have sometimes looked at the NICE guidelines which doctors are supposed to follow and taken a copy of relevant part with me to discuss with the doctor.

There are guidelines on assessing and managing pain. If you are not sleeping properly due to pain at night then that needs addressing by your doctor. Lack of sleep can aggravate pain levels. Some pain medication can help you to sleep better. Medication for pain targets different sources of pain.

See guidance on chronic pain in adults -

nice.org.uk/guidance/ng193

I have different types of pain (accumulated over years) including from surgery, intestinal adhesions, spinal and nerve damage. I had MRIs on the NHS for separate hand and neck pain and pain down my leg. Tingling in hands and feet can be due to lack of certain vitamins or might be neuropahtic. You can ask for a second opinion. Hope you get better help and treatment. Doctors should reassess new pain and not assume it is all the same.