I have MS - I was diagnosed in the late 90s. I'm lucky that it hasn't affected me badly (yet), but I do suffer from pretty severe nerve pain.
I managed it with Co-Codamol 30/500 for years. I'd been prescribed 8 per day but rarely took more than two. Those I'd keep for night as I could, I was told, take on an empty stomach without damaging it.
They'd help me sleep and dull some of the pain and twitching and I was happy to continue with it.
However, I was told at a review I'd have to change to Tramadol as I was an addiction risk. I disagreed but it was done anyway.
I started on 100mg MR but only took it in the morning for daytime pain that I'd ignored until I was taken off the Co-Codamol. It might've just been in my head but these nerve pains got worse after that. The Tramadol seemed to work for a while but I found myself taking paracetamol at night (only a few).
I went away for a week late summer and forgot my pills pouch. Wow! That was an almighty shock. The withdrawal was terrible! I didn't take Tramadol when I came home as I never wanted to go through that again.
By October I'd started having what I know from the descriptions here is RLS. And it's bloody awful. I was getting suicidal from lack of sleep by November so saw a GP. They offered me any of the 3 drugs that I'd read here I should avoid. I asked for a ferritin test that came back as 13. I've been anaemic most of my adult life due to heavy periods but that was a new record for me (previously 15 several years ago). I was refused an infusion but given iron tablets that have aggravated my IBS.
I had my second blood test today so hopefully it'll have gone up. Does anyone know the timescale for raising the level? I've been trying to eat iron-rich food but only manage one iron tablet a day.
In the meantime, my RLS has been so bad I gave in and took 50mg of standard Tramadol for a few nights then nothing for a night in between. However, it seems to be getting worse.
I found some out-of-date Co-Codamol and took two last night. They helped to my surprise. I only had to get out and pace around a bit and use my massage gun twice. I was really surprised that I didn't have restless legs at 6 and 7am like I've been having with Tramadol.
I'm trying the Co-Codamol again tonight (I've been told by a few friends that I'm "wishing" symptoms on myself and that I can talk myself in and out of getting drugs to work or not), so hopefully it will work.
If it does, what are my chances of getting Co-Codamol prescribed?
Do I try to push for it or try the Pregablin I've been prescribed to take alongside Tramadol (I've not told my GP I've come off them).
I've had so many GPs that seem to be uninformed about conditions and drugs that I'm afraid of coming away with no prescription at all. It took 20 years of going there so many times before I got so fed up I paid for a consult with a neurologist who listened to my history - including the part where 24 years ago I was told I probably had MS due to symptoms I had at the time - and who sent a letter to my GP telling him to send me for an MRI and sort it! He did and it was clear I have MS.
What would you all do? I see my options as:
Trying to get Co-Codamol and hope it works
Trying Pregablin
Going back on Tramadol but giving in and taking 2 x 100 mg MR a day and praying I won't get more breakthrough like I was having recently.
Asking for a different type of opiate drug.
I have an appointment with the neurologist in a fortnight and want to go as well-informed as I can and from what I've read, this is the best place I can get proper and up-to-date information.
Interestingly, I had a minor op a few years ago and the doctor treating me asked about my MS and mentioned LDN as an off-licence drug for it that was promising. Is this the same as the Naloxone I believe I've seen written about here? Would that be a win/win for me?
I'm a newbie not only to this board but to RLS and I take my hat off to all you seasoned sufferers I don't know if I'll have the fortitude to be around as long as some of you have been here. It truly is the worst thing I've ever had.
Thanks for reading. I'm hopeful for replies now.
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Princegwyn
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others will provide lots more info, but I’ll add this:
- please fill out your profile so we know where you live and your age; location matters a lot for what medications might be available and how knowledgeable doctors are
- LDN is low dose naltrexone, not naloxone. Both are opioid blockers. Naloxone is used when dealing with an OD. LDN comes in different doses; 4.5 mg is fairly common. I used it for years - it is believed to help a number of conditions, including MS. Helps sleep, energy level, anti-inflammatory, etc. I don’t find it helps my RLS, but some people say it has helped them. Almost side effect-free, so it can’t hurt to try. Insurance doesn’t cover it in US, and it has to be compounded, so it can be pricey ($1 per pill give or take).
I've just filled out my profile with the basics - I just wanted to come back and thank you for explaining the LDN to me. I'd happily pay for it if it works but I'm in the UK and haven't the foggiest on how to get hold of it. It sounds like it would tick all my boxes except for the RLS so that's a good start.
I asked my GP about it once but he said he wasn’t licensed to prescribe it as it would be off label. I seem to remember they can offer it to people with MS but I’m not sure.
That's what I was interested in after the doctor doing minor surgery told me about it. I've yet to seriously pursue it as I'm pretty sure my GP wouldn't have even heard about it.
Welcome: as twitcher says, please complete your Profile with country and age.
You will get much more help with all this from people much more knowledgeable than me as they wake up and log on.
Meanwhile can I just ask what form of iron you are taking (ferrous sulphate, ferrous fumarate...?), how much (in mg) you are taking and when, and are you taking with vitamin C/orange juice?
They started me on the fumarate but (TMI warning) it just comes out of me whole. But a bit paler than when it went in. I started taking it after food with a bit more success but it really upset my system. I'm on the sulphate version now which is a bit better. Yes to the vit C and also that I avoid milk/tea/coffee for a few hours either side.
Only one a day as it causes cramps and constipation which is a nightmare to add on to my MS bowel problems.
You want to take it every other day as more is absorbed that way. Since you are having constipation, get 75 mg iron bisglycinate (gentle iron) which is much less likely to cause constipation. You can get it OTC. It's a shame they refused you an iron infusion as that does not cause constipation. Follow Joolsg's advice to see if you can get it privately
I don't kbow about your medication causing your RLS but what I am pretty sure on that what caused your RLS probably contributed a lot to you MS namely systemic inflammation most probably from your diet. Read up on Terry Wahls ' MS recovery story.
Terry Wahls who had MS Stem Cell therapy! Then made money out of selling her miracle diet story? I don't think so Eryl.As I've told you before, MS is caused by genetic predisposition AND Epstein Barr Virus.
It can be treated with Chemotherapy and Stem cell treatment ( Terry Wahls), or monoclinal antibodies.
How many times have we had this conversation Eryl? Seriously?You know I've tried stricter diets than the one you follow. For years.
It made zero difference to my MS or RLS.
But guess what did work? Tysabri, monoclonal antibody drug every month for MS. It stopped all attacks. And for RLS, diet did sweet FA. Buprenorphine controls it completely.
Please, please stop sending me autoimmune diet videos. They didn't work for me. I followed them for over 14 years.
I haven't thrown a hissy fit. I'm simply asking you not to tell me to try Terry Wahls diet. Again.
As I've said many, many times, I absolutely agree that diet helps some people. They should all give it a try. But it doesn't help the majority, especially where MS, Low brain iron or spinal damage is the cause.
After reading posts here I realised I'd been doing the wrong thing. When I went cold turkey off everything other than paracetamol or occasional ibuprofen for period pain, I had 8 days of feeling like I had a bad dose of flu. I thought it was all over but then the RLS started.
Welcome to the forum. You will find lots of help, support and understanding here.
As others have said if you take Tramadol you need to take it twice a day to avoid withdrawals. Tramadol is the only opioid that can lead to augmentation. And it should never be stopped abruptly but should be weaned off slowly.
Co-Codamol 30/500 is actually a low dose for RLS. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 100 to 200 mg of codeine a day. You need to take it every 4 to 6 hours to avoid mini withdrawals.
Pregabalin is very effective for RLS and is the first line treatment for RLS. Beginning dose is usually 75 mg pregabalin. It will take 3 weeks before it is fully effective. After that increase it by 25 mg pregabalin every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg pregabalin."
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't at Https://mayoclinicproceedings.org/a...
You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. I am amazed with your ferritin so low and being anemic that you were refused an iron infusion. If you can afford it you can get one privately for around 800 pounds. I may be able to give you advice on where if you tell me where you live.
Otherwise take 75 mg to 100 mg of iron bisglycinate which is easier on the stomach with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium, calcium or zinc even in a multivitamin, take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.
When you do have a blood test stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
I've checked out the Mayo link and printed it out to re-read (my concentration is awful plus I will be giving it to the next GP I see. It'll probably hit the bin unread but I'll have tried).
I have had one result back - the saturation. The receptionist wouldn't email it to me as I "could be anybody" despite the address being the one on my records! All she'd say was the saturation was 2.5 but what measurement that is I've no idea. I think that's a bit bad if the measurement is the same scale as the one you mentioned.
I live in Wales and have been told NO to an infusion.
I've ordered the iron supplement you recommended as the ferrous sulphate is not doing me any favours. I'm taking the BetterYou spray iron but it's not a high dose.
I was aware of the "rules" of taking iron, and follow them as you've mentioned. I take lansoperazole but in the morning at least 30 minutes before eating or drinking.
I wasn't aware of the turmeric problem so I'll take it in the morning. I drink tea in the morning and my breakfast is cereal with milk so no iron there.
Other meals I'm now trying to eat iron-rich foods with a source of vitamin C alongside - though I've done that for years as I've been on iron supplements all my adult life due to anaemia.
I did not know about leaving the 48 hours before the test. I did leave off them 24 hours beforehand, though. Will that give a false up or down reading?
I do very little exercise. MS put an end to an active life for me. My balance is terrible and I've been known to crash into and fall over people even though I try hard not to!
My lovely partner massages my legs every night with magnesium lotion. I can't bath any more (I do shower!) but I bought an electric blanket which has made a big difference to my comfort as my legs from the knees down have ice blocks summer and winter for years. It's also great to get back into a warm bed when I've been pacing or using the massage gun as I get so cold (night sweats and getting cold were making me extra miserable until I got the blanket.
I've tried compression socks but they make no difference. I use HRT patches, have done for years as life's quite unpleasant with flushes and joint aches whenever I've come off. I've come off a few times over the years as shortages have forced it. I haven't noticed any difference but this has only kicked off this badly since I stopped tramadol.
I've had restless legs in the early evenings for a few years but they used to stop completely after a massage.
I take biotin every day as they did start trialling it for MS sufferers. Same goes for ALA though I haven't started taking them yet. I have them ready to take when I remember to read the instructions. I also take vitamin D (also supposedly helpful for MS) and Omega fish oil.
Thanks for your help. It's really interesting to see all the little things that could help or hinder and the Mayo link will be plonked down in front of my GP.
I'll be making an appointment in the next few days as I think they might have made a mistake with my blood test. Ferritin was requested but the result I've had was for serum iron.
Is that the same? It was 13 so same as three months ago IF serum iron is the same as ferritin.
I recommend you see Dr Jose Thomas at the Gwent sleep clinic. He prescribes iron infusions and is well versed in RLS and highly recommended by others on the forum. Yes the BetterYou iron spray is an extremely low dose - only 5 mg of elemental iron whereas you need 85. Taking iron less than 48 hours would give a greater reading. No serum iron is not the same.
I will ask GP to refer and if I get a no to that (my LHB is rural with no major hospital so we get sent to the next one over - great except I've been refused treatment after referral as they won't pay their bills. Treatment for nerve pain was pulled halfway through because of this several years ago), I'll ask my MS physio about it. I have an appointment with her after I accidentally overdosed on Fampyra a few weeks ago. I was so tired and lacking concentration I picked the wrong pack up.
I honestly do not understand how I've been given a result for serum iron when ferritin was asked for. Yet another trip to the GP is needed.
You asked down the thread what my DP's cholesterol had to do with mine. Well, I've no idea other than I've seen that GP before and quite frankly she's not up to the job (but she's married to the boss so...). Her advice has been awful for other things but she also tried putting me on the 3 dopamine drugs I'd read here to refuse. Which I did. She seemed to take it as a personal affront.
She also told me that the one leg that's swollen and red was due to my use of those little foot warmers you stick in your shoes when you're off to a football match or whatever. She jumped on blaming those when I mentioned that my legs and feet are always ice cold even in summer. I started using them last November but the photo I showed her was taken the previous June. She couldn't (wouldn't!) understand that I hadn't been using them until desperation set in in November.
When I turned up for my non-ferritin ferritin test last week I was told I was having a cholesterol test. No warning so I could fast. I've also had my HRT patches stopped but the Oestrogel continued. There's endometrial cancer in close family members and I was having trouble mentally with taking the pill form of progesterone so the gynae had me on gel for two weeks (I have some kind of allergy to the patch glue or I'd use them all month), patches for the second fortnight.
I was warned not to use the gel without the patches as it drastically increases the risk yet the surgery seems to to be aware of this basic fact.
I'm incredibly fed up and frustrated with my surgery but it is my only option or I'd have moved years ago. Cock up after cock up with consultants getting quite angry with them - angry enough to write testy letters that, of course, the GP seems to like to punish me for. Then there's the notes fiasco. I have two other people's notes mixed in with mine.
You couldn't make it up!
But I'm here now. With people who understand and want to help. And whose advice I will take very seriously as there really is nothing like lived experience. I'm grateful for the time and effort people put in to reply.
I had the worst night ever last night so I'm diving into the pregablin this evening. Wish me luck!
Are you on Amitriptyline? That is the normal nerve pain killer prescribed for MS. Don't take it! It makes RLS 1000% worse.
Which neurologist team are you under for MS?
Mine at St George's are now aware of dopamine agonists and will not prescribe. They prescribe pregabalin.
Dr Gavin Giovanonni and his team at Bart's use methadone.
However, you need an iron infusion first as your serum ferritin is SO low.
If your GP refused an NHS infusion, do you live near Tooting in London, Truro or Salford. They will do NHS infusions.
Alternatively, if you can find £800, contact the Iron Clinic in Harley Street.
Contact them anyway, send your iron blood test results and ask if they do any pro bono.
Iron infusions dramatically improve 60% of cases BUT, I suspect your RLS is caused by spinal and brain lesions, like mine.
Opioids work well for me, but tramadol is the ONLY opioid to cause worsening of RLS. That seems to be happening to you.
If you're seeing a neurologist, it doesn't guarantee they know anything about RLS. We had a poster yesterday who saw a neurologist in Dorking who was unaware RLS moved to arms during augmentation on dopamine agonists and said children couldn't get RLS. Totally incorrect, negligent information.
There are a few neurologists who know about RLS. So, go informed and ask for an iron infusion first and to try pregabalin.
Pregabalin works well for many with RLS and it helps MS nerve pain.
Low Dose Naltrexone (LDN) is also helpful for MS and RLS, but is only available on private prescription in the UK. It's not the same as Naloxone. You could try LDN but it costs around £30 a month on private prescription.
So
1. Ask for an iron infusion
2. If neurologist refuses, email Iron Clinic in Harley Street to ask if they'll consider pro bono.
3. Start pregabalin. Start at 50mg and increase by 25 mg every 2 or 3 days up to 150mg at night. Stay on that for 3 weeks and monitor. If you still have RLS, increase to 200mg and monitor. Max dose for RLS is 450mg.
4. If pregabalin doesn't help, ask the neurologist to prescribe a long half life, low dose opioid like methadone or Buprenorphine. They are very effective at low doses.
And obviously refuse Ropinirole, Pramipexole or the Rotigitone patch. They will ALL cause your RLS to worsen in time and withdrawal is dreadful.
Never had a problem with tramadol. I visted a neuro center in Pittsburgh and the MD there told me he starts ALL his RLS patients on tramadol. Reason? He's seen too many patients who have gone into augmentation. He said he is done with dopamine agonists forever.
In the case of refractory (hard to treat) RLS, he treats patients with a low-dose opioid a little higher up on the opioid spectrum.
Mayo clinic also starts their RLS patients on low-dose opioids. The physician in charge there is Dr. Michael Silber. He may be on YouTube. Hope this helps.
The Mayo Clinic has campuses in Minnesota, Arizona, and Florida, plus a network of regional clinics and hospitals. Neurologist and pulmonologist Michael Silber works in Minnesota. He is one of the authors of the Mayo Algorithm alongside Mark Buchfuher, Christopher Earley, Brian Koo, Mauro Manconi and John Winkelman.
The Mayo Clinics as a whole offer the full range of RLS medications - still dopamine agonists in some cases, alpha-2-delta calcium channel ligands as usual first line treatments, muscle relaxants, sleep medicines and low dose opioids. They generally offer the opioids for severe refractory RLS if alpha-2-delta ligands are ineffective, not tolerated or contra-indicated:
I was offered the dopamine agonists by the GP who told me I couldn't have a cholesterol test as my partner's cholesterol was fine. I refused and was sent away with nothing.
I'm in the UK but will look up Dr Michael Silber. Thanks.
Re reading your post, did you have RLS before you started Tramadol?Stopping opioids can cause opioid withdrawals. The main symptom of opioid withdrawals is RLS.
So, you may find that if you avoid opioids completely and use pregabalin or medical cannabis for MS nerve pain, the RLS will eventually settle.
My sister had RLS for the first time in her life when she broke her femur, and was put on Oxycontin for 8 weeks. When she stopped Oxycontin, she had severe RLS. For 2 months.
It has now completely settled.
So, stop Tramadol and the co codamol and use pregabalin/cannabis.
If the RLS settles in 2 months, great.
If not, come back to seek advice.
In the meantime, your ferritin is way too low and you do need an iron infusion. Several NHS hospitals will do them, otherwise, the Iron Clinic in Harley Street will do one for around £800.
In the meantime, gentle iron ( ferrous bisglycinate) taken every other night might avoid triggering your tummy issues.
Hi Joolsg. I've read your longer post but thought I'd reply to this one first.
No, I didn't have RLS until I was put on Tramadol. I've always had "growing pains" type of pain in my legs since childhood. A few paracetamol gets rid of those.
Withdrawal from Tramadol was just over a week of flu-type aches and pains and an all-over "buzzing" type of thing. The RLS started last October and is steadily getting worse, interrupting my sleep every hour, starting earlier - from about 4pm until about 9am.
How did you get medical cannabis? I have no faith with my GPs. I haven't seen the same one since 2015 and only locums since.
As I've said in a previous post, I was offered one of the dopaminedrugs in a take-your-pick kind of shrug attitude while being refused a cholesterol as my partner's is fine.
The same GP at the same appointment told me that my red swollen ankle and foot that I've been taking pictures of since June is due to my use of heat pads (the Little Hottie type that I only started in November out of desperation as my feet and legs are so cold all the time). Even in a heatwave.
I think this is my biggest problem. I'm desperately afraid of being addicted. Not so much of addiction itself but because of my GPs.
They took me off co-codamol because it was a problem for others yet stuck me on tramadol. At my last medication review I had a locum tell me I couldn't stay on it forever. That was in January 2023 so I decided to start cutting it down myself.
And that, I believe, was the start of my problem.
I'm reluctant to go back on tramadol as I'm off it completely now. I'm taking out of date co-codamol but it's not helping as I'm trying to eke out a limited supply.
I have a prescription for pregablin but what's that like? Everyone for anything has been prescribed this locally. Quite frankly, I think this will be another problem that everyone will be taken off because of addiction/over-prescription.
I'm at the point of utter exhaustion now. I'm making mistakes and daren't drive anywhere as my concentration is terrible. My nerve pain is bad and not controlled by paracetamol or ibuprofen (the only drugs I'm allowing myself other than Fampyra for MS at the moment).
I have an "emergency" appointment with my MS physio in three weeks. I'm hoping she'll be able to help but I suspect it'll just be a telling off after I emailed her in a panic about an accidental overdose of Fampyra (just one taken too early where I'd picked up the wrong tablet strip in a half-asleep stupor).
If I knew there was an end date to RLS I can stick it out a few months but I don't want to suffer like this for the rest of my life.
How addicting is Pregablin? I'm pretty strong (or always was until I had this - it is without a doubt the worst thing I have gone through) and if some fickle doctor in the future says I have to come off, I can probably go through unpleasant withdrawal that I know won't last forever.
What I don't think I could live through is RLS getting worse and worse, lasting longer and longer.
Oh, my ferritin results are due back this week. I'll update when I get them.
I have no idea why the GP is refusing an infusion. My partner's mother, same surgery has just had one for anaemia and she no longer gets periods!
I'm currently using the BetterYou iron oral spray but will look into Gentle iron. Money is too tight and the travel too far for an infusion in London, though.
Pregabalin is not addicting. And if for some reason you need to come off it, you can withdraw slowly like 25 mg every two weeks and you will have no withdrawal symptoms at all. Don't be afraid of starting it. No everyone is not going to be told to come off it - believe me there would be a huge uproar as it is the first line treatment for RLS. Do read the Mayo Updated Algorithm.
Well, I started it last night. 75mg (all I've been given, told to ask for more if it works).
I'm not sure if it was the Pregablin or if it was exhaustion or a combination, but I had a better night. My legs woke me twice which is how it was several weeks ago. I can cope with that.
I used my massage gun and got back to sleep faster than normal.
I'm a wobbly wall-walker at home normally but I was a VERY wobbly wall-walker last night! I can't believe how fuzzy I felt within a few hours of taking it.
Tonight will be interesting as I'm not so tired.
Out of curiosity, does anyone else get tinnitus after taking them? I noticed it when I woke last night and it's been with me all day.
Yes you can get tinnitus - it is not very common. If it doesn't go away after a few weeks and it bothers you, you can try switching to gabapentin. Although they are basically the same drug except you need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Multiply the pregabalin amount by 6 to get the correct dose. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. If you take magnesium, even in a multivitamin, don't take it within 3 hours of the gabapentin as it reduces the absorption of the gabapentin. If you take calcium don't take it within 2 hours for the same reason.
I don't take calcium unless it's in a multivitamin as I think I get plenty in my diet (at least I hope i do). I've always drunk lots of milk and eaten milk-based products like cheese. I gave it up about 20 years ago for over a year as I'd been told it was terrible and was the cause of all my health problems. Whether it is or not, I felt so much better when I started eating and drinking it again.
Though I suppose you could say the same about chocolate. It doesn't do you any good but it does make you feel better.
I was taking magnesium to help with cramps but I'll take it earlier as I was taking it before bed.
I get tinnitus after I've taken paracetamol at times, ibuprofen, too. But not always. I must just be one of those lucky people.
Is 75mg of pregablin a normal dose to start on? How soon do people increase the dose (if they do?). I'm hoping that tonight will be as "good" (hahaha! Twenty years ago I'd have laughed at the suggestion of fewer than a straight 8 hours as being normal, not just good!). I'm not hopeful as I've had a few "good" nights between the bad ones that were down to me being so wiped out.
But I will be elated if I do get a good one and will forever be in the debt of pregablin - and, of course, everyone here who has encouraged me to take the plunge.
How on earth did people manage before effective drugs?
The magnesium (and calcium) is only if you switch to gabapentin. It is not a problem with pregabalin. 75 mg pregabalin is the normal starting dose. Since it takes 3 weeks before it is fully effective one should wait until then . After that increase it by 25 mg pregabalin every couple of days until you find the dose that works for you. 600 mg is the maximum but you will probably find it effective somewhere between 200 and 300 mg,
Ah, I see. Thanks. So drinking my evening half glass of milk an hour before taking pregablin isn't the problem I thought it was. Phew.
I feel a sliver of hope that things could get better, especially as I have a bit of room to go up. However, I'm going to continue to try getting my ferritin up in the meantime. I don't like taking drugs unless I have to so if that's the real cause of my RLS and I can sort it (and maybe my awful hair loss which I read could also be due to low ferritin), it'll be a win.
It's just a sliver, though. Things are rarely that easy.
I can’t comment about the Tramadol connection and opioid withdrawal vs. RLS. And I really sympathize with the lousy medical advice you have been subjected to! But I will say that you should be able to get this under control with some persistence and hopefully some semi-competent medical help.
I’d certainly try the pregabalin. If you don’t like the side effects, switch it for gabapentin - they are interchangeable. Give it some time to see if it works and what dose is appropriate.
The reason why coming off it takes a while is not that it’s addictive; it’s because of dependence. It may seem like a minor distinction, but it’s not. Your body doesn’t crave it, it just gets used to it and needs some time to adjust to life without it. Tapering off it is not the painful process that coming off opioids is.
And definitely get the iron situation dealt with as a priority.
If the pregabalin and iron don’t work for you, there is always different opiates to fall back on. Long half-life ones like buprenorphine or methadone are used widely for RLS. Buprenorphine has been a life saver for me. Unfortunately you were on perhaps the worst one for RLS with Tramadol.
So don’t lose hope. I think all of us here have our own painful journeys that brought us here. And most of us have found relief and gotten our lives back. You can, too!
Well, I've always been persistent (though I think most I know call it nagging!), so I think I can ride this through. Sort of.
I've coped on paracetamol through the night alone and ibuprofen in the evenings for unrelated pain. The lack of sleep is awful. I've always slept long and hard so waking every two hours (I'm being generous), so it's hitting me hard.
I've stopped the co-codamol. I didn't want to swap one for another at this point.
Thanks to a cock-up (or my misunderstanding of the blood test I've had the result for), I'm no closer to seeing the light at the end of the tunnel as far as my ferritin levels going up and I'm still having a flat NO for an infusion.
I've read many posts here, both from the names I see popping up time and again to support and help and also newbies like myself.
This is a horrible thing to suffer with - I remember watching a program on sufferers years ago and their pain stayed with me. One poor man was jamming his foot in a door in an attempt to get relief. If only I'd known what the future held!
The one thing I can say has helped me is my massage gun. 10 minutes of using it on my leg and I can get enough relief to let me sleep for another hour - I hope this helps anyone here who hasn't tried it but decides to.
I'm sorry I've not replied to all the posts yet. I'm just so exhausted!
Anyway, I thought I'd post my results to see if anyone can illuminate.
My ferritin in November was 13. They didn't do a transferrin saturation then but they did last week. The saturation is 2.5. I've no idea what that means or if it's good or bad.
I was expecting a result for ferritin as that's what the nurse taking my blood confirmed. However, the receptionist I spoke to earlier said the result was for serum iron and the level is 13.
I'm ringing the GP on Thursday as I'm more likely to get through then. Maybe I'll have "answers" from them.
Is there anyone here that can confirm that NHS Wales refuses ALL iron infusions? I've again been told I don't have a hope.
I'm utterly fed up and exhausted. As much from the experience I'm getting from the doctor's as anything else. It's just so depressing.
I’m surprised you haven’t gotten a few responses to your last post. I’m not sure it is showing up as a new post the way most replies do.🤔. So if you don’t get any responses, try posting it as a new thread. I’m in the US, so clueless about your health system and how yo get an iron infusion. Joolsg commented on it 4 days ago, but sounds like you need some help with the Wales NHS. Hopefully someone can help. Find the post from the attorney who helps sue doctors for their incompetence - sounds like you certainly have a case. Damages might help cover the out-of-pocket costs for getting an iron infusion.
The UK is getting more like the US system (I have cousins and friends over there) in that more people are paying insurance or self-paying for private treatment but the NHS here is supposedly paid for with our National Insurance tax. This makes it "free" for uses though England residents pay for their prescriptions but Welsh residents don't.
Being "free" we have little choice in the medical professionals we see. The NHS is a massive organisation that closes ranks on people who complain. It's long and frequently expensive to take anyone in it to court, even if you can find a lawyer to take your case.
I worked in the NHS for years and thought it a wonderful organisation. Not so now. Now I believe that people should be able to choose their GP (we used to see the same family GP but it's so understaffed we're lucky if we get an appointment to see a locum - that's been my experience for the last decade, a different GP every time except for the awful experience I've had twice with the same locum).
I suppose it's the same the world over. Those with money get seen by the best and those who don't have to lump it.
Accidents happen. However, the NHS is getting quite good at having them these days. People are getting harmed - several maternity hospitals have had many more maternal an baby deaths than would be expected. This is awful and unacceptable. I'm relieved I haven't been actively harmed (yet) but it's getting to the point where I (and many others) are not being treated properly and it's downright wrong.
Sorry about the rant. And thank you for your support.
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I am approaching my Dr for first time with what I think I have; RLS - what should I ask?
THEY THINK ITS RLS/I CANT SLEEP
Has anyone been on Tramadol long term?
Blood test (Iron) results - likely the cause of my RLS?!
