Hi all.
I'm actually on a few other sites on here, fibromyalgia, haematomchrosis and healthy eating for fibromyalgia. Was only told I had RLS last week as seen my original consultant from my sleep clinic. An it was him that told me I had RLS , an it also comes hands inn hand with me haematomchrosis. I know when I had my sleep study done they calculated my legs moving 50 xs an hour. Know wonder my legs are in so much pain when I get up on a morning. 🤔
It's not rls-- you have PMLD-- periodic leg movement disorder.
Though treatment is similar.
What medications are you on? Some can actually set off rls.
Hi Madlegs.
I'm only going by what my consultant told me. What's the difference do u know? I take alot of medication: sevredol, gabapentine, fentyal patch, lidocaine patches, duloxetine, and ammatriptaline. It's the ammatriptaline that isn't good for RLS. So he's weaning me of that and replacing it with the Neupro transdermal patch rotigotine..🙂
RLS is characterized by the uncontrollable urge to move your legs - so much so you cannot lay down - even dog tired, you have to get up and walk around. Sleep is frequently very sporadic, maybe 1-3 hours a night without treatment. I agree with Madlegs - probably PLMD, which can occur without you knowing it, and has a similar heritage with RLS.
Hi DicCarlson. Yeah my sleep is very poor due to this and other health problems. My legs move uncontrollably it is frustrating. It's been going on for a while now. It also happens with my hands and arms to which he said can happen. So we're going to try the treatment change for now and see what happens.
My goodness what a complicated case.
Your conditions
Haemochromatosis - this is where you have TOO MUCH iron in your body. This can cause pain, especially in joints.
Fibromyalgia - a neurological condition. Amongst other things it causes pain, possibly all over. It might feel like muscle pain, but is actually nerve pain.
PLMD - a neurological condition which cause you to kick in your sleep. It's usually associated with RLS which you might have as well, but with all the medication, might not notice.
Your medications
Fentanyl - a very strong man made opiate (pain killer). In patches, it is released in a constant, steady dose so the amount of it in your blood doesn't rise and fall like a yoyo which would happen if you just took tablets. I presume this is for the pain of your Haemo.
Sevredol - another very strong pain killer (opiate). Presumably for the pain of your haemochromatosis when the Fentanyl isn't quite working.
Lidocaine - this is a local anaesthetic and I presume you put the patches where the pain is. For your haemochromatosis.
Amitriptyline - is an antidepressant. It is also used for nerve pain and especially Fibromyalgia.
Duloxetine - another antidepressant, also used for nerve pain e.g. Fibromyalgia.
Gabapentin - a drug originally used for epilepsy, but is also used for nerve pain, Fibromyalgia.
You are therefore using 6 medications for pain. Probably 3 for your haemochromatosis and 3 for your fibromyalgia.
The antidepressants, Amitriptyline and Duloxetine may be making your PLMD worse. However, both opiates and Gabapentin are used to treat RLS and PLMD. Overall it's quite surprising then that you have PLMD at all. The oplates are VERY strong.
I think it would be a very good idea to see your doctor to have a medicines review. If you're in the UK this might be a GP. They might not be very knowledgeable about your conditions, not many are about RLS or Fibromyalgia. Haemochromatosis is fairly rare.
BUT they should be have access to information sources and many GPs can now contact specialists by email.
Ideally it seems to me, you should only be on one opiate and one nerve pain medication, Gabapentin. The doses might have to be adjusted.
The Lidocaine should make no difference to your PLMD.
I suggest that if you don't understand anything, ask questions. It might be a good idea to write them down before you go. You might take along a family member or friend with you. They can be an extra "ear" and help you remember what's been said.
I hope this makes things clearer for you.
Many thanks for your response. Please forgive me if this sounds abrupt, it's not meant to be,wording can come across in that way if not saying this face- face. I'm well advised with my GPS,all my consultants, whom I've been under there care for years now. It has taken years of seeing different medical people to finally get my diagnoses. I get regular check ups with my gp. I'm also knowledge to what each medication is for and what the possible side effects could/ Can be. I totally understand what is going on with my body. My husband always goes/ comes to all my appointments with me . All my meds are for fibromyalgia, chronic and widespread pain. I get regular blood tests to check my ferratin levels don't go to high , if it does then I get a venesection done. Haematomchrosis isn't rare, mine is genetic. My son had to be checked but thankfully he's not got it. I've only recently been diagnosed with RLS but people who have haematomchrosis often have RLS. I'm being weaned off my amitriptyline slowly as it can cause RLS, consultant has put me on neurpo (I think that's how it's spelt).
Great to hear that, it seems you are well informed and doing the right things.
Ferritin levels getting too high can create its own problems I know. It's ferritin levels that are TOO LOW that contribute to RLS. So that particular factor shouldn't be an issue.
RLS is a new diagnosis for you and I'm not sure then whether this is RLS secondary to Haemochromatosis or primary (Idiopathic) RLS. In any event, it might be a good idea to find out as much as you can about this new condition, Its treatment and side effects of treatment
Just a point about RLS to check with you. You may have the symptoms of RLS, I don't know, Someone has told you that you have RLS, but more signifantly you have PLMD, so it would be good to find out about that too.
Neupro, sorry if you already know this. The patches contain a medication called Rotigotine which is a dopamine agonist. Dopamine agonists are the first line treatment for RLS/PLMD.
There are other treatments for RLS and for "refractory" RLS i.e. where nothing else is relieving it, opiates can be prescribed.
Gabapentin is also used to treat RLS.
I don't think your case is straight forward. You are already on 2 opiates and gabapentin and still have PLMD. I just hope the Neupro works for you.
Hi yes you are correct yes that is what it means that I've got to much iron in my blood. I originally found out that I had this from a more complex set of bloods that were taken, but going to low affects my RLS. The person that told me that I had RLS , was not just anyone it was a consultant of neuroscience. Yes I'm well informed of all of my health conditions. My RLS is secondary to my haematomchrosis. I'm going to contact my consultant tomorrow and mention the PLMD,
As for the Neupro, yes I know it contains dopamine and so does my consultant as we spoke about it. I already know my case is complex and so does he.. yes i know all about the neurpo and what it can do. This is the first start weaning of my ammatriptaline for the neupro, and we'll take it from there.
Great, sorry then that I couldn't help.
You might wish to double check things e.g. there is NO Dopamine in Neupro
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