I realise this is a long shot, but I've been suffering with all sorts of pain (along side my cluster headaches - I'm chronic sufferer) for as long as I can remember. My neurologist finally pushed my doctor to refer my to a rheumatologist, who I really was not impressed with how badly he listed in the telephone appointment.
Spoke with the specialist on Thursday, feel as though I was not listened to nor taken seriously. This is greatly impacting my quality of life and he didn't seem to acknowledge this.
Despite FMAUK agreeing that my symptoms do indeed present as possible Fibromyalgia and that the pressure test that doctors used to do is now massively outdated, the specialist didn't allow me to speak of everything and dismissed those I was able to get across.
The rheumatologist doctor questioned why I was using injectable sumatriptans, instead of tablet form "which would be better" and had to explain to him that a) my neurologist prescribed it and b) that the tablets are not suitable for the condition as they do not get into the system fast enough and that I cannot use the nasal sprays as I suffer with non-allergic rhinitis, which again is linked to fibro, which stops the medication from getting to where it needs to.
He then spent a great deal of the telephone appointment telling me how I was taking too much Vitamin D, despite having cleared this with a GP at my surgery and the NHS guidelines stating it's the max dose that can be taken and how I should be drinking lots of red milk.
He then went off on a tangent about my sleep problems and that I don't suffer with insomnia - because insomnia is only problems falling asleep, not staying asleep. When the very definition itself is falling asleep and staying asleep. Then started telling me that I needed to cut out caffeine before bed, which I have already done for a long time to help minimise the impact to sleep and talking about foods. I've had numerous discussions with my neurologist about this, who has said that cluster headaches impact the hypothalamus, which screws up your ability to sleep properly - he also said that fibromyalgia can amplify the problem.
The neurologist agreed in our last appointment that everything I brought up, symptoms wise, sounds like fibromyalgia or ME - but could not make a firm diagnosis until bloodwork had been done and I'd spoken to a rheumatologist.
Do I need to carry on with my complaint, where I feel as though I wasn't listened to? As I've done so many tests and read so much literature online that to me, (I'm obviously not a medical professional in any way, shape or form) it looks as though I either suffer with Fibro or CFS/ME.
Just looking for some advice and guidance.
Spoke with the specialist on Thursday, feel as though I was not listened to nor taken seriously. This is greatly impacting my quality of life and he didn't seem to acknowledge this.
Despite FMAUK agreeing that my symptoms do indeed present as possible Fibromyalgia and that the pressure test that doctors used to do is now massively outdated, the specialist didn't allow me to speak of everything and dismissed those I was able to get across.
- Limb numbness / weakness
- Limb joint, shoulder, neck and back pain. Stiff joints in morning. Pain from simple things like walking stairs, getting in and out of chair and car, but also picking things up - wrist/elbow/shoulder pain from lifting kettle or even mug
- Sleep isn’t refreshing to me at all, I can't remember the last time I woke up and actually thought "wow, that was a great sleep"
- Waking up and feeling "stiff" and also being awoken by back/shoulder/neck pain.
- Leg pain in bed, having to move the leg to distract
- Cannot stay asleep - literally waking up at least five/six/seven times a night, where I'm consciously doing so.
- Get very tired and achy from menial things like walking to the local shop or driving a short distance
- I suffer with constipation one day, upset stomach the next
- I get shakes in my arms
- Armpits sometimes feel tender and feel swollen
- Brain like thinking through treacle when tired or stressed
- I suffer from both cluster headaches (which has links to fibro) and tension migraine
- Hand pain for no reason
The rheumatologist doctor questioned why I was using injectable sumatriptans, instead of tablet form "which would be better" and had to explain to him that a) my neurologist prescribed it and b) that the tablets are not suitable for the condition as they do not get into the system fast enough and that I cannot use the nasal sprays as I suffer with non-allergic rhinitis, which again is linked to fibro, which stops the medication from getting to where it needs to.
He then spent a great deal of the telephone appointment telling me how I was taking too much Vitamin D, despite having cleared this with a GP at my surgery and the NHS guidelines stating it's the max dose that can be taken and how I should be drinking lots of red milk.
He then went off on a tangent about my sleep problems and that I don't suffer with insomnia - because insomnia is only problems falling asleep, not staying asleep. When the very definition itself is falling asleep and staying asleep. Then started telling me that I needed to cut out caffeine before bed, which I have already done for a long time to help minimise the impact to sleep and talking about foods. I've had numerous discussions with my neurologist about this, who has said that cluster headaches impact the hypothalamus, which screws up your ability to sleep properly - he also said that fibromyalgia can amplify the problem.
The neurologist agreed in our last appointment that everything I brought up, symptoms wise, sounds like fibromyalgia or ME - but could not make a firm diagnosis until bloodwork had been done and I'd spoken to a rheumatologist.
Do I need to carry on with my complaint, where I feel as though I wasn't listened to? As I've done so many tests and read so much literature online that to me, (I'm obviously not a medical professional in any way, shape or form) it looks as though I either suffer with Fibro or CFS/ME.
Just looking for some advice and guidance.