Please Help :(

Can anyone please help...

I'm really suffering from RLS at mo, in my legs and arms. I have a few factors which I think contribute to it but not sure there's much I can do about them. I'm looking for help, tips, things that I can try that others have said really help.

1) I'm on 20mg fluoxetine and I know as an SSRI it's a bad one for RLS. Trouble is the docs don't know much about RLS and their alternatives to this - still bad ones that interfere. What do people suggest?

2) Been diagnosed with low iron anemia and waiting for an endoscopy as I'm getting symptoms of IBS. I was trying iron supplements but doc said to lay off, due to endoscopy appt. I can't understand why he said that? I read there is link with low iron to RLS. ?

3) I'm getting it in arms and legs. It's unbearable. I have to get up 6 every day. I am so drained and feel like I'll collapse but I keep going in. How do people who work and have to be up early cope? Any tips?

4) I have just had an IUD removed. Doc said this could have contributed to the low iron due to heavy periods and the loss of blood. Had this for about 8/9 years. It's out now as finally I feel it's time and wasn't helping with the anemia and probably contributed to it. Am I right in thinking this and will this help with RLS ?

I'm at my wits end. Every time I want to sleep to catch up or feel bit better...I get the symptoms. Always when I nap or when it's like midnight or 1am - whenever I am ready to sleep (tried earlier and still happens!)

Any help would be grateful. My health is really suffering.

32 Replies

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  • 1 & 2 will be exacerbating things HUGELY. Please check out rlshelp.org and rls-uk.org to see a list of offending drugs. If I recall correctly the likes of Trazadone or Zispin are less likely to cause problems but for my money getting rid of the Prozac would be high on the list.

    You need iron, to add to the whole thing those of us with RLS cannot store iron in the brain so even when we have good iron levels there is not enough iron in the brain for the dopamine to be used properly. Check gentle iron in the search engine here.

    You will have to get the information and take it to your GP they are notoriously underprepared for RLS. Many do things that make it much worse for us, (are they not meant to do no harm?).

    I too have it all over and it is terrible it just destroys your life and the pain can be horrendous. See your GP about treating the RLS, you'll need something as you wean off the Prozac, (if you have been on a SSRI for any length of time you will need to wean off or you can get some terrible side-effects).

    What you can do while all this is going on is to take hot baths and showers, (it gives a little relief and that is better than none), avoid caffeine, (tea, coffee, chocolate :( ), and watch for the likes of sugar and artificial sweeteners as these can cause it to flare too.

    I am no longer able to work but I would have paced while at work to help deal with the legs. I'd slip off to the loo to stretch my arms and torso. And I slept whenever I could - tea breaks at work, waiting for someone, in my dinner!

    There will be others chipping in with help soon too. So rest assured you are in the right place and will get all the best help/advice there is to get!

    Take care.

  • Hi Raffs, how has the RLS been lately? Yuna I have read that Prozac has a good safety profile and it seems to be (that I've seen) what doctors will prescribe for their own kids. I've known three people to stop Prozac without any noticeable withdrawal symptoms. So I guess what I'm saying is to do a lot of research before switching.

    I agree with Raffs that the Gentle Iron also known as "ferrous bisglycinate" is the way to go. When the RLS is bothering me I take one 25mg capsule on an empty stomach and the RLS is gone in about an hour. Not a cure but for me equal to or better than a pain med. Some people get immediate or near immediate results as I do and RLSGill and Bganim and DicCarlson while for others it takes longer for improvement. And for some getting their iron levels up is a short term cure. At this point, DicCarlson is RLS free and only needs to take the iron once a week. That's as close to a cure as we have right now. Right now my iron stores are above 100 yet I still get RLS several times a week and thus take iron several times a week. I am trying to improve the RLS through diet and lessen my dependence on iron. Hopefully you too will get to the point where you are trying to lessen the iron :).

    No matter what it sounds like your doctor will eventually have you start iron supplementation. Recent research points to better iron absorption if you do NOT take the iron supplements several times a day. Every other day would provide even better absorption but for those of us with nightly RLS we don't have that option.

    Let us know how your tests go.

  • By the way, there has been anecdotal evidence that "the Pill" and HRT can make RLS worse than it has to be. It is well known that substances such as melatonin, antihistamines, certain antacids and sadly anti-depressants can trigger or worsen the symptoms of RLS.

  • Hi both

    Thanks so much for your reply

    Yes I will try and get the ferritin iron up. I just need this to refrain from being so intense

    I'm confused though tredlight, do you suggest coming off the fluoxetine and meds altogether? By this, dropping down the medication and withdrawal carefully? Or swapping to another med?

    I have to say I do feel ready to come off these meds as it's been 2 years and I was going through a bad time when I was put in them

    I'm in a much happier place mentally now and my life has turned a 360 compared to where I was. I welcome coming off them or at the very least - dropping it down to 10mg.

    Removal of my IUD coil last week also should help with the anemia. Although bleeding for 2 weeks since doesn't help.

    Another obstacle is I get hat fever and I know that anti histamine aggravates RLS. :(

    If it isn't 1 thing it's another!!

    My docs however - are hopeless when it comes to this - I just don't think they know what to do, if in fact they even know what is.

  • Hay fever !!! Sorry it's the dumb auto corrrect thing on the iPhone.

  • Which antihistamine are you taking? It may not even be one of the bad ones like Benedryl. And it's not that it's bad it's just that it antagonizes dopamine release. We want as much dopamine released into our central nervous system as possible.

    If I were you I would buy 25mg ferrous bisglycinate as quickly as possible and take it on an empty stomach one hour before bed. Just once a day and only before bed. This form of iron should not bother the IBS or minimally. I have IBS. IBS is a basket term and not a fatal disease so I'm not sure why doctor had you stop. Every thing happens for a reason. I bet you were taking ferrous sulfate 2x a day? That just doesn't seem to be as effective as the ferrous bisglycinate. Some (several on here but not all) get immediate or near immediate relief with the bisglycinate. The Prozac might negate the immediate relief unless you take a high enough dose of the bisglycinate (like 50mg) but you have to get your doctor's permission.

    I was just like you only I was taking 1mg melatonin and developed restless body. I think I went three nights without sleep until I read on-line about taking iron at night. Because I have IBS I bought ferrous bisglycinate. It worked the first night and every night. One night I ran out and the health food store was closed so I bought ferrous sulfate from the drug store figuring I would rather be constipated than sleepless. I totally expected it to work especially since the mg were much higher. NOTHING - no relief. Back to the bisglycinate I went. It worked until I upped the melatonin to 3mg. Then I found I had to take two capsules. I got aggravated with having to take so much iron and did more research and found out that melatonin will trigger symptoms. The day I stopped the melatonin is the day my RLS went quiet. It had always been mild and intermittent since childhood until the melatonin.

    So yes, eventually you may want to try tapering off of the Prozac. Nothing ventured nothing gained. You can always go back on the Prozac but somehow I doubt you will. And even if the iron doesn't provide immediate relief you should continue to take it to see if you are like others who only get relief after several weeks or even months.

  • I do feel ready to as 2 years ago it was traumatic and that stabilisation was needed

    I had just broken up from a relationship where I was engaged to be married - wedding planned. I had moved over100 miles from my hometown to live with this person...all of a sudden I had to move back - transferring my job (again), and having to move in with parents as my house was rented out at the time. I was drinking a lot and became addicted to codeine.

    I then fell into depression, was off work for about 7 months.

    Now 2 years later. Not touched alcohol in 2 years, quit smoking, left my job and gotten another where I am happy, and kicked the codeine. I am finally complete again. So in a much better place. I still worry about stopping them though. But this damn RLS....

  • Ahhh, the warrior's journey, it's a rough one. You are literally a warrior now. I agree with you, the Prozac is no longer needed. Hopefully, like me, once you stop the dopamine antagonist (Prozac for you and melatonin for me) your symptoms will be greatly reduced and the iron will take away any residual. I know it sounds funny, but you had to go through those traumas. I truly believe that most of us will face similar situations and somehow have to survive and emerge wiser and stronger.

  • Allow me to recommend a book by a native American - Jamie Sams. The name of the book is Dancing the Dream - The Seven Paths of Human Transformation. It is NOT a book about religion - just the unbeatable human spirit.

  • Congrats on things getting better and deciding to go without the Prozac. Chat to your GP about it and coming off, (don't let him/her bullshit you into staying on it), and come off safely.

    Good luck.

  • Sure some can stop with out much problems but that doesn't mean its the best thing to do. I stopped Mirapexin and Tramadol cold turkey and can't remember things too bad with Mirapexin but the tramadol withdrawal was horrendous.

    I am going to nail my colours to the mast and say that antidepressants are no where near as effective as claimed since the research was carried out by the companies that made them and it is a well known secrete they aren't good - they mask the depression treating only the symptoms and keeping people in misery - there are other ways but unfortunately they cost too much and the dug companies would loose out!

    Yes I do know they help some but overall they are a dated treatment modality and in today's world should be consigned to the bin!

  • Tred, would you be able to send me a link or pm me with the link to the ferrous biclystinate (sorry terrible spelling but you know what I mean). I don't want to go searching or buying the wrong thing, so thought it might be best to shop and get the brand you get. Also with the internet and these types of things, I don't want to get some rubbish fake stuff. Thanks xx

  • Several of us on here use Solgar's Gentle Iron from Amazon. It's the real deal. If you google all of those terms Amazon's website will pop up right at the page you need. The price varies depending on size but I usually get 180 capsules for $10. 6 month supply for $10 :) The catch is that if you don't spend something like $50 you have to pay shipping. :(

  • Ok that's great. I'll get searching! Thanks Tred x

  • Is this it?

    Solgar Gentle Iron - Iron Bisglycinate - 180 x 20mg Vegicaps

  • Yes, exactly!

  • Hi Tred

    I have the tablets !! Got the ones you said. Could you just confirm when is best to take the dose?

    I cannot tell you how bad last nights sleep was. My arms are worse than my legs. I'm so hoping this works as I'm losing the will to live !!!

    Hope to hear back from you! Thanks again.

  • Hi Yuna, most people on here take the iron on an empty stomach about an hour before bed. Don't give up hope there are many treatments yet to try. I hope u have a good doctor who u can call for additional advice and a prescription for desperate moments.

  • Wow you have low iron I forgot. You could actually take two capsules with doctor's permission. Plus if worse comes to worse you can wean off those meds that are likely bothering your RLS. Lots to do and try so no time to give up.

  • I'm not sure if I can do that. My doctor, the surgery - extremely hard to get an appointment with any of them. The tabs are 25 mg. it says 1 per day. I would be worried if I took more...but should it be fine/safe? I don't know

  • Nah, start with one, and in the meantime leave a message for your doctor. Force him or her to take this journey with you and let the doctor know how much you are suffering.

  • Not working I'm afraid :(

  • Takes at least one hour. Any difference?

  • No. It is 3am. Arms hurt terrible and legs twitching like mad......😞😞

  • Got any potassium in the house?

  • Nope

  • How many iron tablets did Doctor prescribe for u to take a day?

  • He didn't. I was taking liquid iron called spa Tone.

    This is worrying me now. I'm on vacation from work this week. But I go back next Monday

    Tred....I can't have this going on when I have to get up for work at 6:30am. I can't nap in work. I only have half hour lunch and I work on a computer all day in a busy office.

    I'm so worried. What am I going to do.....😞

  • What do u think about tapering off Prozac? You know your RLS - did it get worse with the start of the Prozac. There's an antidepressant called trazodone which is also used as a sleep aid and does not bother RLS. But is not much used for clinical depression anymore. In addition I would continueto take the iron because like the Prozac, anemia will make RLS worse. And talk to your doctor about taking two at night. I know some people who take two without a problem but talk to doc. By the time you go back to work you may very well be sleeping fine. Maybe throw magnesium into the mix? Now that you're off work for the week throw caution to the wind and bug your doctor. Do u still have codeine in the house for an emergency back up when u go back to work?

  • Sure hope u r fast asleep 😴

  • Hi there, sorry to read about your problems. I can really only comment from a personal perspective on 1 & 3.

    I have been on an SSRI for many years (Citalopram) and my RLS was so bad a couple of years ago that I decided to come off the Citalopram, convinced as I was that it was a major factor having read so much about it. I was off it completely for about three months - however my RLS did NOT improve and I sank back into depression. So that didn't work for me and I went back on the SSRI.

    What did work was getting to see a neurologist who seemed to really understand the condition and, after a bit of trial and error, I am now being treated with 300mg Gabapentin and 0.5mg Clonazepam. This has worked very effectively for me for nearly 5 months now - only 3 nights in that whole period where I have had RLS (compared to 3-4 times per week before). Different things work for different people, but so far that's been the best thing for me in nearly 20 years of suffering.

    As for the arm thing - yes I get that too, normally a little after the RLS starts in my legs. I would have to get up, sometimes for 1-2 hours in the middle of the night and was exhausted in the mornings. I am generally an early riser and am often in work by 6 or 7 am. The only answers I had for this were (1) go to bed earlier (if you can) and (2) try to get a nap in the day. I NEVER have RLS if I nap in the day. I know many people counsel against it on the basis that it may interfere with your night time's sleep, but when you're that tired and have RLS I found it the least of my problems. How to nap during the day? The ways I did it were (1) go down to my car at work (luckily I drove in) and (2) start to work 1-2 days a week from home. I appreciate you may not be able to do either of those things!

    I hope there's something in here which helps, and good luck.

  • Thankfully I'm retired now so can sleep in or nap when necessary, but towards the end of my working life I was finding it very hard to stay awake throughout the day. I saw my boss and explained the situation and she agreed I could use our small medical room at lunch times if no one else was needing it. I tried not to take advantage but it was such a blessing when the tiredness was overwhelming. I know that not all bosses are as understanding but it might be worth asking if there's the facility at your workplace.

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