Fed up with the BS doctors give you

[terry9griffins]

Just a little bit about me for people that don't know me on here I'm 41 and I've had find diagnosed for 10 years.

Now for the rant and moan bit.

I was told just the other day by my doctor that there is nothing more that they can do that is including putting my medication up. The amount I'm on is a joke really considering I was on more a few years ago on the same tablet. I'm on Tramadol but only 250 mg a day with a 100mg of Pregabalin when about 4 years ago I was on double the amount of tramadol. Apparently I can't go back to my neurologist because that's only for a diagnosis and I already have a diagnosis.

I've never even been offered zomorph and I don't know why. I suppose my question is should I change my doctors or am I just gonna get the sam run around.

The Pregabalin controls my spasms to a level I can tolerate but the pain is not something I can tolerate for much more really need help in this area. Feels like small electric shocks pulsing in your body constantly.

I don't know what to do anymore as my lower back and neck are in constant pain but it's getting worse because the tablets aren't helping and the headaches / Migraines that can last for up to 2 days make me feel like my head's gonna explode. They say more opioids will only make the headaches worse. To be fair to them that's one thing I could really do without even just the stress of the pain can start a headache these days

Any suggestions would be great as all the doctors can suggest is another pain management course which didn't help me the first bloody time.

I'm just so f-ing tired or all there BS my body is failing me and so are the doctors.

Has anyone else had the same treatment from there GP

[Shimmyaway]

If I recall, you had an appt at the Barberry in B'hm some time ago. Do you still have a neuro psychiatrist consultant who can offer something, ....therapy, onward referral, or at least medication to make life a bit more livable? The medics I have encountered don't give me BS, but do leave a lot to DIY.

[terry9griffins in reply to Shimmyaway]

Unfortunately I've basically been left to It I don't have any specialists involved anymore and as for the FND specialist that I saw what a waste of time he didn't answer any questions I asked him and felt like he wanted an early lunch. I just got to wait for pain management and that's the option my GP wants to give me.

[eviedotty]

have you had your eyes tested, I had a really good outcome from this in that two of the tiny muscles that move the eye around are damaged and for the eye sight issue I was made a pair of plain tinted glasses and this took a lot of pain away for me. Pain for me when left unchecked affects my actual eyesight giving me what I can only describe as snow blindness effect, all of this now I understand the problem is now well managed

[Hidden]

Terry I fully understand what you are saying once you get a diagnosis of FND the doctors and consultants wash there hands on you and send you on your way,

I am back to see my doctor in a couple of weeks which I am pushing for a full body scan also after doing research I have been in touch with the ataxia helpline they think I have Cerebellar ataxia and have written to my doctors to send me to the ataxia hospital in Sheffield let’s hope the doctors does

My walking balance and head has got really bad and now looking for a mobility scooter

Good luck keep fighting

[Shimmyaway in reply to Hidden]

That's really good news for you .. these charities are doing great work .

[Shimmyaway in reply to Hidden]

The place is Sheffield sounds ideal, but if your Dr's referral doesn't work, did you know there is a specialist ataxia clinic at the regional neuro rehabilitation centre in Birmingham ..and don't worry, they don't have one for FND!

[Westie_1]

Hi terry9griffins I totally understand where you are coming from and same as me I have been referred back to neurologist. Not that they have done much tbh. But i am taking candersartan 6mg per day for my migraines which have slightly improved but still get them but not as severe at the minute. They have also reduced my tramadol a new gp at our surgery who didn’t even know me reduce them to 6 tramadol tablets per week?! When I used to have the option of 200 plus a month. That was hard to adapt but I’ve done it. Anything with morph on the end might take your pain away but it will also wipe you out for a few days. I only know this because my husband had a stroke and he is on 2700mg of gabapentin 3x a day. Which does not always work so they put him on some form of oramorph. He was bed bound 2 to 3 days at a time. I hope you get some relief for your pain as there is nothing worse when it is constant. Good luck I wished I was of more help!

[Hidden]

KNOW how you feel I was similar with the tramadol

Was on tramadol for years

Seen pain nurse who said

How you fancy halting the tramadol

And putting pregablin up to max dose same time with paracetamol as paracetamol helps pregablin work more

no tapering needed i queried it but seeminy a way to avoid no tapering

She did say with docs permission i agreed

And it has helped me more than the tramadol

Now

600.mg pregablin

Just an option if not tried if docs agree

If no value to you understand

[terry9griffins in reply to Hidden]

Unfortunately I have already maxed out on the gabapentin and there not willing to give me anything else at all until I've gone on another pain management course just feels like they don't know what to do so they just bump me off to someone else.

[smilesontherun]

I had severe migraines. My prior neurologist put me on a few preventatives, but they didn't really do anything for me. In November, I was put on Nurtec ODT to use as an abortive. I was having between 5-6 migraine attacks a month. I had great success with Nurtec ODT. I'm on it full time as my preventative. I know everyone is different, but perhaps you can ask your GP if Nurtec ODT would be a good treatment for preventing your migraines. They're the worst.

[terry9griffins in reply to smilesontherun]

Thank you very much for the alternative option I will definitely look into that one. Take care.