Help

[Unhappygirl]

Thank you one and all for your kind thoughts and advise, today l rang my surgery, as a result the receptionist is printing off my blood results also an appointment with a doctor ( who l don't know, but I have to wait weeks to see the doctor l usually see) l am hopeful she might have fresh ideas, finger and toes crossed. I will let you know the outcome. Once again a huge thank you, being in this forum has given me a life line to normality xx

[Hidden]

Well done and I really hope the GP appointment gets you further forward and they understand how important it is for you to get your ferritin levels up to at least 100 - and quickly!

Let us know how you get on.

[Unhappygirl in reply to Hidden]

Thank you, yes l will

[Unhappygirl in reply to Unhappygirl]

Just had a phone call from my surgery after seeing the doctor yesterday, they need more bloods to be done before a decision can be made, the last bloods l had done was for ferritin only, going on Monday to have them done.

What do you think it means.?

[Unhappygirl in reply to Hidden]

I replied to you but think l put it in the wrong place, sorry, l am a fool

[involuntarydancer]

Well done unhappygirl. Looking back over your posts I notice that your symptoms seem to wax and wane somewhat. Maybe it would be worth your while keeping a diary to try to establish patterns. Just now, while it is bad, it might be worth cutting down on what you eat all round. I find that going to bed with a slight hunger - or at least not feeling full - helps sometimes. Also avoiding sugar and refined foods in favour of simple fare seems to be useful. Magnesium rub on the legs, compression stockings and stretching exercises are all useful for when the legs strike in the night. I also find that emptying my bladder can have quite a beneficial impact. A very diverting computer game can also help and at least distracts from the black thoughts that accompany a very disturbed night. I am currently trying taking two glucosamine tablets at 8.00pm as someone posted that they found this helpful. This will be my third night so not a very representative experiment but the last two nights were amazingly good for me. Probably placebo ... but I'll take it!

[Pippins2 in reply to involuntarydancer]

Involuntarydancer how much glucosamine are you taking? Any recommended brand? X

[involuntarydancer in reply to Pippins2]

Hi Pippins, i bought Solgar extra strength Glucosamine Chondroitin. Each tablet provides 1245 mg glucosamine and I take two tablets at between 6 and 8 pm.

Another good night last night even though I have now eliminated pregabalin and am only taking 0.044mg pramipexole (which has become inadequate on its own for my rls), 125mg dipyridamole (which helps but does not eliminate rls), and a slightly increased dose of ldn (6.5mg) which is an experiment as I read of someone who found that a higher dose of naltrexone reversed their augmentation. I also bought some nicotine gum as I read a few people saying it alleviates symptoms when they come on but I haven’t needed it so far.

[Unhappygirl]

Went to the surgery today and to cut a long story short she is going to make some phone calls tomorrow to see if they will agree to an iron infusion. Keeping my fingers crossed

I'm so grateful for all your support, l will let you know when I know

[LotteM in reply to Unhappygirl]

Wow. Well done, also for your gp. And now we’ll keep out gingers crossed that it will work out for you. 1. That you’ll get the infusion and 2. That you benefit from it.

Keep us posted!