more pain , more tears.....

[moonlight]

Hi guys ...fortunately am a lot better getting acupuncture twice a week now and its helping.
Helen I too walk every day for miles always have so don't know if that was the culprit or not.
I've got a gp appt on Friday so am going to mention everything to her.....now also including the fact that my cholesterol is up to 6.2 and shes not bothered , well I am as most of my family on both sides have died of heart conditions!!!!
I get codeine no prob 30mg tablets can take up to 90mg, they don't like me taking that all the time , but needs must I tell them.
I think if the health professionals could live in our shoes for a bit we would get better care!
The diazepam isn't for my rls but I get so worked up when it's bad that I take it to calm me down, it's for my bpd.
for sleeping i
I've got temazepam but sometimes add codeine and definitely sleep.
Polar bear I hope your getting relief.
My previous gp was rubbish he said you've got restless legs live with it......ha ha ha he obvoisly didn't have it.
at least this one will give me codeine to help ...still cant get any relief using tens, but it does help the trapped nerve, its what it was given for.
will let you know what happens on friday with gp.
thanks for all your replies .

[badnights]

moonlight, I hope all goes well for you.

It helps if you organize your information for the GP, and start with the most important (the WED/RLS, presumably). If you don't get to the bp this visit, make another appt to discuss that. This way you will hopefully get an answer to the first problem on your list, the WED.

I don't know all the in's and out's of your condition but the first thing to communicate to your GP is that your symptoms are not being controlled by your current medications, and the consequences of that are (list them; eg. sleep quality is poor, daytime symptoms distract me from work, etc.). Once this is clear in your GP's mind, she will understand your request for a referral, or she will prescribe something different herself.

It's important to try to separate in your own mind what the problems are, otherwise your GP will be unable to figure it out. You have pain from your knees, and your sciatica; that needs to be addressed separately from the pain/horror of RLS symptoms.

What is this emg test you spoke of? The only lab test relevant for WED/RLS is, as Polar Bear said, the blood ferritin test. You can legitimately ask your GP for that. MAke sure your approach is not accusatory (and they can be overly sensitive about that); just tell her you've found out that raising the ferritin level by taking oral iron has reduced symptoms in some people, and your reading tells you that RLSers should have ferritin above 50, so could you please get that checked? Then show her your printout that says ferritin should be checked every 3 months.

It's so hard to know how to talk to a doctor when you're swamped with pain from multiple condistions and foggy-brained from everything that's abnormal in your life. I wish you luck with this appt, moonlight.

[moonlight]

been to gp and she said my ferritin is 24 which is too low...
I asked about what id found on .nhs inform about different tests ,she told me that these tests are used of the rls is secondary to another condition.
She took blood and is checking ferritin, magnesium, b12, thyroid and kidney function, so will know next week how they go.
told to increase codiene and not be scared to.
i will as last night was nine hours of unbearable hell, deffo the worst night !!!

polar bear the site i was on was www.nhsinform.co.uk

[Polar Bear]

Thank you for the link.
I hope tonight is better for you.

[badnights]

me too moonlight. Don't be afraid of the codeine. I think you probably need something stronger.

[Polar Bear]

IIRC - I was at a friend's house (a long time ago) without my meds and she gave me codeine pills x 60mg and that worked for me.

[moonlight]

ha well i thought the other night was the worst ever......I take that back as last night was worse , had extreme electric shocks going up my legs and in my arms weird thing was it was mainly my left side and I just couldn't stay still ended up with tripling my codeine and eventually got relief.
Am terrified its going to start tonight , so far so lucky, mind you have been on my feet so far making my Christmas cake and its only now am sitting down.

[Polar Bear]

Moonlight, good luck for tonight and remember to stay 'ahead' with your medications. Don't wait for the symptoms.
Wishing you lots of zzzzzzzzzzzzzzz

[badnights]

At one point I was barely under control with 150 mg codeine in two doses (bedtime and half-way through the night ) PLUS 2400 mg gabapentin in two doses through the night.

[Polar Bear]

Badnights - that was pretty severe. Such a dose and still barely under control.

[moonlight]

Am glad to say have had several good nights and some bearable ones too.
my blood tests showed everything as ok apart from the ferritin at 23 so am on iron for a while
so will see how i get on , havent taken any codeine for several nights
and don't really want to go onto anything stronger >>>>yet

[Polar Bear]

Glad to hear you are getting some sleep and hope this continues.
It will be interesting to see how quickly your iron goes up

[badnights]

moonlight
hope things stay calm for you
b

[moonlight]

so far so good......but the iron I've had to reduce a bit so it will just be for a longer time

[badnights]

Are you taking vitamin C (250 or 500 mg) with your iron pills? It makes it absorb much better.