I have been quiet for a few week's when my Ferritin levels were at 14 so a new Dr. put me on to Iron Sulphate and the level went up to 134 so they are wanting me to keep taking the Iron. I take a pill every other day with orange juice, thought it was helping my leg's and arm's but no ! After 3 night's of no sleep at all , I rang the Dr. in tears so I am now taking 1 Baclofen at night but I am still getting up every night, sometimes for 3 hour's, sometimes more. I'm exhausted, the Baclofen is affecting my balance. I won't go into all of my health problems caused by misdiagnosis because my story is in my profile! I used to be so active and I have been trying to go for short walks but that doesn't help. The one thing that helps a bit are compression socks from the NHS but I gather I can't wear them at night.The Dr. says that Baclofen takes time to build up . Is anybody here taking Baclofen and is it helping? I can't believe how exhausted I am and this has just got so much worse even though the Ferritin level has gone up. The RLS went out of control when I had Campylobacter and ended up in hospital and then they let me home with an allergic reaction to the antibiotics! I do not like our hospital much except for my Thoracic Consultant who refound my tumour after 15 month's!
Any insight and advice is much appreciated. Thank you. Take care all.
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Danni54
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Thank you Sue . My Dr. said that I couldn't have an iron infusion because although the Ferritin was low , I'm not anaemic. Thank you for all of your help previously. I don't know how everybody keeps going with this horrible thing and the lack of sleep. When there is a lot of pain involved elsewhere, it's so difficult to cope I find . By 3 p.m. my fracture's and stomach are in agony and I have to lie down though I don't sleep, get up at 4.30 to make my husband's supper but then have to lie down again as the pain is crippling. I was on Opioid painkiller for many year's and took more when I got cancer but they were stopped abruptly and that's when thing's got worse because I went into withdrawal. The greed of Pharma companies is breathtaking! Thank you again, Sue and take care .
Danni, please try the iron again. Only this time think about trying a type called ferrous bisglycinate. You must take it on an empty stomach about an hour before bed. I take 50mg and it gets rid of the RLS in one hour for one night. Ferritin (stored iron) is much less important to RLS than serum iron, which is this kind of free floating iron in the bloodstream that plummets at night and we get RLS. If it doesn’t work that first night then you can take it however is most convenient or recommended by your doctor.
Danni, baclofen is usually given for severe muscle spasms in MS. There are a few limited reports that it can sometimes help RLS.It's a strange choice.
Raising serum ferritin does help the majority of patients, but not everyone.
It seems like your RLS worsened after the campylobacter episode.
Have they given you pro biotics to take? Bad bacteria and strong antibiotics can destroy the good gut bacteria, cause poor absorption of iron and vitamins and worsen RLS.
Try a good pro biotic like Symprove or VSL.
Then ask the GP for pregabalin, taken at night only, starting with a dose of 50mg and increasing by 25mg every few days up to 150mg.
It does cause dizziness and weight gain but watch your food intake and the dizziness settles usually within a month.
Show your GP the NHS and NICE guidance on RLS, both of which mention pregabalin.
Do NOT start Ropinirole, Pramipexole or the Neupro patch because they WILL cause RLS to become very severe over time.
Read RLS-UK website to ensure you're familiar with treatment options and meds that worsen RLS.
Hi again. Thank you so much for all of your advice. I have tried PreGablin and Gabapentin and had really bad reactions to both. I will get prebiotic 's though and this did start with the Campylobactor although I did have it occasionally when they stopped my Opioid painkiller's abruptly. I don't really understand why Baclofen and I can't get a straight answer. It seems since Covid that everything with the NHS and Dr.s is such a battle and it's exhausting! The lung cancer misdiagnosis fiasco was confirmed to me last week and now it looks as though they have made an error with my Colon so I now have to have investigation's there. My , original, Dr. was so off with me about the Ferritin level so I spoke to a lady Dr. who has been much better.
Thank you again. I hope that you are managing to sleep. All the best.
A low-dose opioid (in my case, 10 mg/day of methadone) has been giving me 8 hours of sleep every night for the last 4 years. Are you sure you can't get back on them?
Hi. Thank you for replying. Thing's are getting worse and I'm exhausted as we all are! I was on Dipipanone and Cyclizine for year's but when I had the lung cancer misdiagnosis I was taking 3 of them a day. After the Lobectomy I cut that down to 2 a day with no bad effects but then the Pharma Company kept upping the price till the NHS could no longer afford to give them to us . There was no programme put in place for us so it was instant withdrawal and my health and pain has deteriorated and then the RLS started. There is no way that the Dr. will put me on other Opioid's or Methadone. He says he wants to wrap me in cotton wool...I said I just want help ! Compression sock's through the day help I think but I gather I can't wear them at night. The trouble is that I am in such pain with my stomach and vertebral fracture's that I have to lie down through the day. I don't know how we all keep going. I think we are all pretty amazing even if we don't think so ! If you see what I mean !
This is so awful to read. They're leaving you in pain and suffering.Like DoDahMan, I have zero RLS and sleep 8 hour's a night on 0.4mg Buprenorphine, a long lasting opioid.
As pregabalin and gabapentin have severe side effects for you, opioids are next line treatment.
Can you change GP surgery or see a sleep doctor or neurologist who would prescribe Buprenorphine or methadone?
Where are you in the UK?
Dr Jose Thomas in S. Wales prescribes iron infusions and methadone/Buprenorphine..
Prof. Walker does the same and will do telephone appointments privately and then the GP could continue to prescribe as long as your health area doesn't red list Buprenorphine.
Thanks Jools. I do have a low dose Fentanyl patch and if I forget to change it on time I get withdrawal and the RLS is much worse. I live in Scotland. I can't drive any more and long journeys are not possible which upsets me because I have family in Devon, Cornwall and my big sister is in Aberdeen and I can't travel to see any of them.As for changing Surgeries, all of the Surgeries are fully booked up and they are not taking any patient's who already have a Dr. ! So many people are moving here but the infrastructure can't cope. Our hospital is on it's knee's! I will look into contacting the people you have suggested. Dipipanone is an extremely strong Opioid so when it was stopped it did a lot of damage to a lot of people and from what I have been told, the Scottish Government are trying to ban all Opioid's and are making it difficult for Dr.s to prescribe any ! I have been given Oramorph, 2.5 mg up to 5 mg a day. It does nothing for the amount of pain I have and since the RLS has gone out of control my pain back and front has got worse because I'm up most of the night.....ironing or doing other housework! I can't tell you what the pain is like! RLS is just an added nightmare...so, a half life. Sorry! Hate moaning!
I am due to have a CT with medication on my Colon on the 2nd and met a lovely Surgeon ( at last! ) when I was in hospital with the Campylobactor so I'm hoping that he will help me with the pain and I'm going to talk to him about the RLS going out of control after I was in hospital. Mind you they , also, Sent me home with an allergic reaction to the antibiotics where my whole body had a rash...just short of Anaphylaxis! The Dr.s in hospital were told but they discharged me without even coming to see me! The Nurses weren't happy! The medical profession hate me I think apart from the lovely Consultant who found my lung tumour...for the 2nd time. Anyway, a lot has happened! I used to do so much but now I feel pathetic! If I could sleep then I'm sure that that would help !
Thank you for ' listening ' and thank you so much for your advice. Please take care. All the best.
It is terrible what is happening to the NHS. I have no words to express my rage.I'm so sorry you are still in pain & the RLS is worsened by the withdrawal from dipipanone.
That should settle after about 2 months and hopefully the fentanyl and oramorph will reduce the RLS.
I think medical cannabis would help you. You could try it for a month to see if it reduces your fibromyalgia pain. It does improve sleep.
Hi Joel's. Have only just read your reply. After not sleeping at all last night I've been feeling so ill today and everything has hurt. The Oramorph and Fentanyl don't help the RLS at , unfortunately. Even my finger's have started to feel ' twitchy ' ! I will write more tomorrow or later tonight! Off to take some Oramorph as the pain is out of control. It's so good having you to talk to because you understand so well what I and other's are going through. Couple of thing's I want to ask you but will do that later. Sleep well! All the very best.
Hi Danni, not sure if the docs made any of these suggestions but a brace/wrap, ice and pharmaceutical grade lidocaine patches can really ease the pain of vertebral fractures. For me, ice is nothing short of a miracle, for so many things. You can also try heat and see which ever one works best. But for new injuries (at least first week) ice is best.
For the gut, slow and steady wins the race. When you have a healthy gut microbiome (whatever that is) everything works better. Probiotics in the form of fermented foods, especially Kimchi, will get you there. I’m not a fan of any probiotic supplement. Takes months of probiotics, along with a fiber rich diet, to see a substantial difference. Very worth it. I also recommend researching a substance called berberine. Just Google berberine and gut health, or just berberine, and read up on it, and see if this is something that sounds worthwhile to you. Large hiatal hernias are tough, I have one. I use a wedge pillow at night and find it effective. I’m trying to get very thin because I feel that will give my stomach more of a chance to rest in place and then maybe that sphincter muscle might actually have a chance to do it’s job and close off the stomach acid. I’m also trying to massage my stomach down into place before bed and in the morning. If you have any kind of damage in your esophagus or ulcers in your stomach the best thing is zinc carnosine. I like the Lane Labs brand. It is truly a blessing. It is by prescription in Japan. They recognize how effective it is.
You have to keep chasing the osteoporosis - meaning keep throwing things at it. Research something called MK-4 and even MK-7. There’s a somewhat new, once a month injectable, that’s supposed to be quite effective for osteoporosis. Once again, the injectable is something you have to research and decide for yourself and with your doctor.
Are there any great chiropractors or Naturopaths by you? They too can be very helpful. I go down fighting. Two of my kitchen cabinets look like something you’d see in a science lab. I’ve found some good solutions over the years but mostly I’m still fighting the invisible foes
I am in the usa. Here some states allow medical Marijuana and some allow recreational Marijuana and in some states its banned. I specifically went to a state where they have recreational mj that anyone over age 21 could buy at a licenced mj dispensary so i could see what affect it would have on rls. They had a kind of gummy mj that was called "rest" i did not get ridiculous high from it and i got at least 4 hours solid sleep with it. I have severe augmented rls - its only good for sleep hours of course and i'm not sure if it stopped the rls or just conked me out hard but it might be something for you to consider - im thinking of moving to that state just so i can legally use mj. My current state it is illegal
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