Back with a vengeance !!

[bedith6]

Hi everyone. I have suffered with RLS since i was 22 and am now 87. I have taken all sorts of medication in the past as well as the patches and the only thing I have found works at all is Tramadol and I take four of these each night one hour apart. Over the past couple of months I have been on cloud nine because somehow my RLS seemed to be in remission. I was getting a good n ight's sleep and was ab le to watch T.V without being constantly having to jump up and down, it was wonderful. However for the past three days it is back worse than ever so what's going on? The on ly thing I can think of is that I have been drinking ordinary tea when I used to drin k decaffienated. I have gone straight back to decaffienated but RLS i sreally distressing me now. You would think at my age I could get a bit of peace and rest wouldn't you? If I knew a quick way to end it I would it's that bad. Sorry for such a long post but you're the only ones who are going to understand. X

[Graham3196]

I have sent you a list of things that might help by private message.

Graham

[bedith6 in reply to Graham3196]

Hi Graham I saw the new G.P. today. She has agreed to a blood test to check for Ferritin levels but said that an earlier test showed a normal result of 60. When I told her that was not nearly high enough for an RLS sufferer she offered me iron tablets. I said I needed an iron infusion which rather threw her. She said she will have to do some reading up of the NHS guidlines re. iron and RLS and get back in touch with me when the results are through. Thanks for nthe help you have given me so far.

[Pippins2 in reply to bedith6]

Hello Bedith sorry you are struggling. Unfortunately in the UK it is extremely rare to be given an iron infusion purely for RLS. It may be an idea to start on the iron tablets prescribed by your GP and take them with vitamin c for example a glass of fresh orange juice to help absorb the iron. Then in 3 months time get your ferritin iron levels retested to see if it has raised them x

[Graham3196 in reply to Pippins2]

Hi That sounds reasonable but it means an extra 3 months of suffering. Iron tablets may help some for marginal patients but the IRLSSG paper says "administering oral iron when serum ferritin is greater than 75–100 μg/l is likely to have very limited benefits within a reasonable, clinically meaningful period of time."

I think bedith6 has done well and started the discussion about an iron infusion with a cooperative GP who has accepted the job of reading up more on the subject. I would say very well done! From what I have read on this forum its easy to guess what the NHS guidelines are for RLS and iron infusion. It would be good if you can visit her again to discuss the blood test and send her some information for her to read before that appointment. I suggest you send her an email thanking her for her cooperative approach and quoting Doctor Buchfuhrer's email, Then she will only have to convince herself that Doctor Buchfuhrer is a valid authority, which is not all that easy, but you can also send her the link to that more authoritative looking research paper that someone found recently. I have put that link below as well.

Iron and Doctor Buchfuhrer 20Jun18 email from Doctor Buchfuhrer who is a sleep specialist practicing in the area of RLS at Stanford Health Care in USA. Associated with Stanford University.

stanfordhealthcare.org/doct...

"We have learned a lot about iron absorption and iron therapy for RLS in the past few years.

When we quote the goals for iron therapy, it is based on only 2 studies that showed a benefit from oral iron therapy when the serum ferritin is brought above 50-75. That was the guidelines for those studies and they did not look to see if higher levels brought further relief of RLS symptoms. Furthermore, it is very hard to get serum ferritin levels much above 100 with oral iron therapy.

Now that we have been doing iron infusions for RLS for a few years, we have gained additional knowledge. We find that some patients need to get their ferritin levels above 200-300 in order to drive enough iron into the brain (the best way to find out how much iron gets into the brain would be a spinal tap but that is of course not something we would do very casually or routinely). However, we would recommend keeping the ferritin level no higher than about 350 in order to avoid issues with iron overload which could effect organs like the liver, kidneys and heart. Therefore, an iron infusion with a goal of getting your ferritin between 250-300 could be very helpful. You should also be aware that only certain iron formulations (INFeD and Injectafer) are beneficial for RLS patients. "

The link to the IRLSSG Task Force Report

"Evidence-based and consensus clinical practice guidelines for the iron treatment of restless legs syndrome/Willis-Ekbom disease in adults and children: an IRLSSG task force report"

clinicalkey.com.au/#!/conte...

Of course if your ferritin level comes in at 400 then all this becomes irrelevant except that your GP might be more helpful to others in the future.

Good Luck

Graham.

[LoisTonya]

Hi Bedith

I really feel for you. My rls has worsened. Could the hot weather have anything to do with it - perhaps dehydration?

[Gazleebryan]

Hi bedith6 I know how you feel and the only meds that helped me was tramodol. I have posted a post this morning link below. I know it’s a long read but I have completed a lot of research and used my RLS as a case study in my psychology assignment in college, I believe there are some great tip there if you would like to have a read. healthunlocked.com/rlsuk/po...

[Jumpey]

My heart goes out to you in your desperation. I really hope you get some help from the site Gazleebryan has sent.xx

[Hidden]

I feel so bad for you and what you are going through. It is hard to deal with all of these things.. Here's hoping for some fast resolution for you, and LOTS of good, quality sleep

[bedith6]

Thank you so much to all of you who replied to my post. There are severel suggestions I am going to try so we'll see what happens. Regards Bedith

[phj505b]

I have had restless legs for 20+ years. They're finally under control w sinemet & valium (might be different names in the UK). BUT, every 6-8 months they come roaring back and I'm pacing until 3 or 4 a.m. But only for a week or 2. I take oxycontin when they get that bad (luckily I don't like opiods - don't like how they make me feel, but they do knock me out). My neurologist said that RLS often come in waves - can get very bad for a week or 2 - and then settle down & are controlled again by the regular meds. Hope this is true for your symptoms!

[bedith6 in reply to phj505b]

Hi Thanks for your reply I am going to try some of the advice I have been given on this site . Everyone is so helpful so we'll see what helps. Regards

[Casinogoer]

Hi bedith6, I have had RLS for over 25 years. I am now 73. It used to start at night and I would sometimes be u for 73 hours straight except when I would fall asleep from pure exhaustion for maybe 20 to 30 minutes here and there. It was so bad that I was walking into walls. I felt like I was going crazy. I have been on just about every possible meds known, including methadone. If I died tonight it wouldn't be soon enough for me. That is how bad it is. I am just so tired of living with this. Sometimes it will start at 3 in the afternoon and stop for a little while and then come back at 7pm until 2 or 3 a.m. I know what you are going through. I guess your iron levels have been checked and especially the ferratin level. Other than that, just keep reading what others have to say and maybe you will get so ideas from someone that will help. Good luck!

[bedith6]

Hi casniogoer. I'm so sorry that you are suffering as you are. Of course I know just what you are going through and unless things get better I also feel like quiting ,but I have had some very good advice from other sufferes so will try to follow some of it. Hope something works for me. Regards Bedith6