Care to help?

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eripmav

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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symptoms do indeed present as possible Fibromyalgia and that the pressure test that doctors used to do is now massively outdated, the specialist didn't allow me to speak of everything and dismissed those I was able to get across.

  • 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.
 

sunkacola

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Dec 2, 2016
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1,644
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Hi eripmav, and welcome to the forum. Unfortunately, many of us here have had similarly frustrating experiences.

To me, what you describe sounds like FM, and I have some of those same things myself, others here will say they do as well. But of course that's not a diagnosis.

Since your doctor says you cannot get a diagnosis without a rheumatologist, and the one you talked to is clearly a butt head, and poorly informed on some things (like insomnia), I would try hard to get referred to a different one, if I were in your predicament. And maybe you could get your blood tests done by your personal doctor if you have one.

One of the most important things is to find a medical professional, whether it is a doctor or a NP or RN it doesn't really matter which, who will truly listen to you and take what you say seriously. Any one who doesn't listen to you is not going to be helpful.

It's good to know what you really have if that is possible because treatments can be different. I would advise pursuing this, but first do some research, maybe even calling several doctor's offices to ask, and find yourself someone to go to who actually treats people with fibromyalgia so that they will take you seriously.
Best of luck!
 

eripmav

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Thank you, Sunkacola. I'm frustrated - it took me nearly ten years to get a firm diagnosis on the cluster headaches situation, not sure I have the energy to do this for another decade! :) The first neuro I saw insisted I didn't need any abortive drugs, just antidepressants. This put a bee in my bonnet, so I investigated her - realised she was an epilepsy specialist and had no background in cluster headaches. I then found a specialist and managed to ping his secretary and get under his care.

I had my bloods done a few months back, which was what showed me as being vitamin D deficient - doctor originally thought it was a lack of the vitamin that was causing the aches/pains etc. I have my follow up appointment with the GP on Friday; hopefully I'll be listened to but I am not going to speak to the rheumatologist I dealt with previously.
 

Alta

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Mar 14, 2021
Messages
24
Reason
DX FIBRO
Diagnosis
03/2015
Country
US
State
TX
It sounds like fibro to me. I would ask your neurologist to order blood work to rule out ME or MS since he sounds like he listens better, I would then take the results to a rheumatologist. My PCP diagnosed my fibro. If possible you should also see a neurologist.
 

Flexecif

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I agree with Alta. It's definitely a must to go see your neurologist to be certain and have your treatment as early as possible.
 
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