Getting No Help and feeling desperate

[Jezee]

I have severe restless legs and am going around in circles with my doctor and neurologist. Being waiting months for a CPAP machine but now my doctor wants me to do another sleep study. I have been using kratom for years but now it's not really working for me and am close to packing it all in. I live in the UK (North East) and wanting to know if there is a medical centre that I can walk in to to get help and medication. Thanks

[Eryl]

Something which can caue RLS and sleep apnoea is systemic inflammation which is most commonly caused by foods in the diet, notably refined seed oils and carbohydrates. Gluten speeds up the absorption of carbohydrates by causing leaky gut so avoiding wheat makes a lot of difference. There are lists on the internet of foods that cause inflammation. youtu.be/i_sFmwQrW2Y?si=GVi...(Not working as expected?)

[Jezee in reply to Eryl]

Hi Eryl thanks for the reply, my restless legs is hereditary, my father has it and I have suffered since I was 10, now 56. I don't eat gluten or dairy because of IBS.

[Eryl in reply to Jezee]

Restless legs is not hereditary but diet is very much a learned behaviour from the family and the sensitivity to diet may be hereditary. My father had restless legs and so did I untill I changed my diet, my mother still can't get used to the things I avoid these days to be free of RRLS without using medication.

[Jezee in reply to Eryl]

Hi Eryl, according to the Mayoclinic "RLS is familial in about 50% of patients" . My diet is pretty strict, the only thing that makes them worse is sugar.

[Eryl in reply to Jezee]

Starches are just long chains of glucose which are easily broken down such that white bread has a higher glycaemic index than pure sugar.

[Jezee in reply to Eryl]

I don't eat bread, I stick to mainly meat, veg, eggs and have fermented foods.

[SueJohnson in reply to Eryl]

RLS can be hereditary. Mine is. I have been tested and have the genes for it. Obviously it is not hereditary for everyone but it is for some.

[Virginic in reply to SueJohnson]

My husband’s is too.

[89874438863 in reply to SueJohnson]

Сью здравствуйте, а какое тестирование надо пройти для определения наследственности?

DeepL Translate: Sue hello, what kind of testing do I need to do to determine heredity?

[SueJohnson in reply to 89874438863]

join 23andMe and then join 23andMe+ (costs $199+$69

[Maymount in reply to SueJohnson]

Hi Sue! Just wondering what you find helpful for your RLS? Thanks fir all advice given on this forum. Eithne

[SueJohnson in reply to Maymount]

I take 1500 mg of gabapentin and it completely controls my RLS.

[Maymount in reply to SueJohnson]

Thanks Sue. Do drink any alcahol? It can be my trigger so I curtail it.

[SueJohnson in reply to Maymount]

I usually only drink alcohol when I go on cruises but haven't bee n any since before the pandemic.

[Maymount in reply to SueJohnson]

I'm slowly reducing pramiprxole. Used to be on 5 of .008mg now down to 3. I'm fairly fit and active but I've noticed extreme fatigue around 3pm. Just wondering cld it be a side effect of reducing the Pramipexole. If so it's frightening how powerful affect it has on the body/mind. It will take me 6 months to be rid. Any reason u chose gabapentin over pregabalin? I will have to decide towards the end. Thanks. Sue

[SueJohnson in reply to Maymount]

It definitely can be yes. Congratulations for getting down to 3. It's not easy. My doctor put me on gabapentin but the reason I always suggest it is you can increase it by smaller amounts. Once you find the dose that controls your symptoms you can always make a direct switch to pregabalin if you want by dividing the gabapentin amount by 6.

[Joolsg]

Sadly, your neurologist is known to be unhelpful & rude and behind on the latest RLS treatment.Kratom is very useful in the short term, particularly to get off dopamine agonists. However, it can quickly cause tolerance and addiction for many patients, so should not be used long-term. Reducing it can be hard, so go very slowly.

Have you ever tried gabapentin or pregabalin? Did Dr Anderson ever suggest them? They can help many RLS patients.

There is NOWHERE in the UK that has a walk in centre or clinic that is up to date on RLS.

They all still follow outdated NHS & NICE guidance and still prescribe dopamine agonists, which are no longer first line treatment amongst experts ( in the USA).

There are only a few doctors in the UK that know more than the basics, and you'll probably have to pay privately to see them.

Professor Walker at Queen Sq, UCL, Dr Jose Thomas as Gwent sleep clinic and Dr Robin Fackrell in Bath, will all prescribe pregabalin/gabapentin or low dose opioids.

The most effective opioids are methadone and Buprenorphine because they have a 24/25 hour half life. Getting them is a postcode lottery. Even if a private neurologist prescribes them, your local GP surgery may refuse to take over and continue to prescribe.

So, first see your GP and ask whether Buprenorphine is 'red listed' in your area. If not, ask GP if they will consider a one month trial.

If red listed, only a neurologist or sleep specialist can prescribe and monitor the prescription.

One other (desperate) last option to get effective treatment, is to use a local drug addiction clinic. They would actually use low dose Buprenorphine (you wouldn't need more than 1mg pills) to help you through kratom withdrawals AND it would treat your RLS. They know more about RLS than most other doctors because RLS is a main symptom of opioid withdrawals. HOWEVER, this is a last resort because you will be recorded as an addict and your job and DVLA licence will be at risk.

It is actually appalling that I have to mention that as a possible way to get humane, basic treatment of a serious disease!!!

[Marzipana in reply to Joolsg]

Appalling is right! That is insane that one would need to go to such an extreme to get a drug that likely would alleviate RLS symptoms. Now I'm super-curious to find out what will go down at my appointment here in Wiscosin in 3 weeks! Will I need to grovel and beg to get something that works?!? I hope not....

[Joolsg in reply to Marzipana]

Fingers crossed for you. X

[DogsCatsFamily in reply to Marzipana]

Not to discourage you but depending on your doctor in the US it can also be difficult to get the help you need. I live in CO and have been having a difficult time getting the help I need and made an appointment to see a Neurologist but it's taking almost 6 months to get in and see them.

[Jezee]

Hi Joolsg, I have been on kratom for over 8 years but my body seems to be getting used to it. I have many different suppliers and strains, and spent a fortune. I have tried both pregabalin/gabapentin but they both gave me headaches and made me feel groggy all day. Maybe I need to retry them. I asked Kirstie to try me on buprenorphine but she said that she doesn't have any expertise on them. If what I wrote is not making sense I appologise as I'm feeling really low and tired.

[Joolsg in reply to Jezee]

Totally understand. We know how bad it gets.Kirsty Anderson could easily prescribe Buprenorphine. To say she doesn't have 'expertise' is very odd. She purports to be an RLS expert, so it's very simple to research and read the Mayo Algorithm and Dr Berkowski's study on Buprenorphine and Dr Winkelman's opioid register. Links below.

So, consider going back to her with copies of the relevant information, including details of the average effective dose.

Buprenorphine pills are available in 0.2, 0.4, 0.8 and 1 and 2mg pills in the UK.

As you are on kratom, which acts like an opioid, you could start on 0.4mg buprenorphine pills and increase by 0.2mg every few days. You can start slowly reducing kratom at the same time.

If Kirsty Anderson refuses to prescribe Buprenorphine, she should refer you to a sleep or pain clinic locally that will prescribe it.

Or, if your GP will prescribe it, ask Kirsty Anderson to say she will monitor you.

I'm so sorry you have to fight to get basic treatment. It really isn't acceptable that patients have to suffer so appallingly because of lack of medical training and knowledge.

neurologyadvisor.com/report...

mayoclinicproceedings.org/a...

massgeneral.org/rls-registry

[Jezee in reply to Joolsg]

Kirstie wanted to put me on a CPAP machine as she says I have got mild obstructive sleep apnea (ODI 10 per hour). At first I refused as I asked to be referred to another neurologist. But no one else will take me on. I then contacted my doctor and said I would try the CPAP machine even though I don't think it will do anything. It's medication I need as I can't get in to bed as my right arm and leg go crazy when I try to sleep. That was 3 months ago I've now just received a letter from my doctor asking me to have a sleep monitor fitted. I've already had a sleep monitor fitted. I'm going round in circles. I tried both Pramipexole and gabapentin early last year. I've had full panel blood tests and one of my readings was over 500. Kirstie still tried an iron infusion last year but it didn't help. She didn't even ask me afterwards if it had helped.

[ChrisColumbus in reply to Jezee]

I wrote to Dr Anderson (and other neurologists) about RLS treatment. I don't know that this is helpful but Dr Anderson wrote that she is "generally reluctant to give any significant degree of night time opioid" unless she has "screened for additional obstructive sleep apnoea". That doesn't seem to be an outright refusal to prescribe an opioid in all circumstances, but also doesn't spell out what she will prescribe and when.

[Jezee in reply to ChrisColumbus]

It's like pulling teeth. My doctor wants to monitor my sleep again but I'm up and down most of the night walking around the house. How will the sleep monitor help? It's medication I need to start with. What meds are you on?

[ChrisColumbus in reply to Jezee]

My mother and at least two siblings had/have RLS: I'm afraid that Eryl is wrong in insisting that RLS cannot be inherited. He may be right in writing that sensitivity to diet may be hereditary, but diet is NOT the only factor in RLS.

I suffered from RLS for decades but never took meds for RLS, as when I enquired 30 or so years ago (coincidentally in Newcastle where I was living at the time) I was offered anti-depressants which I was never happy about taking.

I never had low ferritin or found iron helpful, but did find 10+ years ago that daily magnesium citrate helped a lot. A long period of experimentation followed and I found 18 months or so ago that the following resolved my RLS:

Cutting out diet drinks and foods - the artificial sweeteners - particularly aspartame - were triggers; reducing sugary foods and drinks particularly later in the day; reducing caffeine particularly later in the day; avoiding known triggers such as sedating anti-histamines, most anti-depressants, anti-psychotics etc; trying to stay hydrated enough but trying to avoid having to get up in the middle of the night; trying to take regular moderate exercise; staying cool in bed (temperature wise!); sleeping as much as possible on my side or front rather than on my back; avoiding statins, particularly atorvastatin but also tried rosuvastatin, as these induced terrible RLS as well as extreme tiredness and joint/muscle pains.

I only very occasionally suffer from RLS now, and only when I break my own rules.

Unfortunately, listening to others who have tried, I fear that simple steps like mine may need to be taken BEFORE one embarks on any extended period of use of dopamine agonists. People - like  Joolsg - have tried all sorts of diets and treatments but have needed low dose opioids after DAs. That's not to say that tackling the things I did may not ameliorate the symptoms somewhat for some even after DAs, but I don't know that.

[Nanpat in reply to Jezee]

you’re totally right, I have sleep apnea and use cpap.

It has no affect on my rls at all, I use the buprenorphine patch. I can’t see the reason for another sleep test?

[Nanpat in reply to ChrisColumbus]

Agree , the crazy thing is a cpap machine doesn’t stop rls. I use one

Sufferers still need to treat the rls ?

[Cowbsky in reply to Jezee]

Hi, Jeeze

_ just to let you know my experience, with severe RLS since kid, and UARS (uppper airways resistence syndrome) + mild sleep apnea OSA (only during REM sleep), maybe since 18 year old. Both treated only after some 40 years of suffering;

_ Nobody knows why, but these two conditions very often come hand-in-hand. From my own experience and much literature/education by my own, there would be no solution for RLS, before treat OSA/UARS (depends on sensivity of your nervous system you may have too much awakenings/wakeups, nightmares, and then RLS attacks);

_ medication: only 0.6 mg of clonazepam + EFT (emotion freedom technique) for years and years, and since some one year ago, lamotrigine too (it looks improve nightmares/PSTD);

_ CPAP: (actually, I use a Bilevel CPAP, much better for UARS, which almost always come together with OSA, and can more deleterious than OSA, eventually). A sleep study might be interesting, however, if possible, you could go strait to Bilevel machine (you can first rent one if available). Then, every morning you take the card from the machine, download data to the OSCAR app and analyse them (instructions and literature from this blog: apneaboard.com/forums/ );

_ untreated OSA could be even more serious than RLS: high blodd pressure, diabetes, and so on.....

_ all the best and good luck

[Jezee in reply to Joolsg]

I should also add that in her letter Kirstie wrote "I would not have expertise in using Buprenorphine for restless legs and we generally would not do this without close supervision and of course their would be a possibility that it would aggravate obstructive or central sleep apnoea.

[Joolsg in reply to Jezee]

It has the lowest rate of respiratory depression amongst opioids, but if she doesn't keep up to date on RLS research, she won't know that.However, she is correct about sleep apnoea. If it's treated properly with CPAP, it CAN resolve RLS. There is a theory that lack of oxygen causes RLS.

Dr Thomas at Gwent Sleep Clinic confirms that quite a few of his RLS patients find their RLS disappearsvor lessens after CPAP treatment.

Definitely try it.

[Becomeone in reply to Jezee]

Hi l am where you are at this moment In time taking Tramdol have been on everything there is to take here in the UK l can't even get a appointment or phone for my doctor l am going to private to someone most doctors in the UK don't have enough information o no how to treat RLS l need help now but there's nowhere to go l even thought about going to A&E I'm that desperate no body seems to understand the extremities of this condition I've had since condition since my teen.now on my sixties I'm so tired out.

[Becomeone]

I am in the same place trying reading up on this treatment Stellate Ganglion block I'm going to ask about it when l get to see a neurologist I'm in on a waiting list some people don't get the RLS sytomes after this l bet they won't do this procedure.in the UK😡 hope this can help other suffers

Hope this will help other RLS suffering

[Joolsg in reply to Becomeone]

If you've only just stopped Pramipexole, you will experience severe RLS for at least a month. Pregabalin won't help until around a month after your last dose of Pramipexole.Has your GP taken full iron panel blood tests?

[Jezee]

Fingers crossed that you can get it done.

[SueJohnson]

Sounds like you need to change doctors.

[Dotmowatee]

I live in Plymouth, and I have just had a follow up consultation with Dr Lucia Batzu in King's college London. My local neurologist actually admitted that he didn't know as much as I did about RLS ! For about a year I have been taking Targinact, a slow release opiod. It is licensed for restless legs, my GP and pharmacist are great. Dr Batzu is very happy with me and has even suggested that I can increase the dose, which I don't need to do. I am on the minimal dose and it is very effective. Please talk to your GP if you can or as Sue says, change doctors.

[RLSHenrik]

Yes RLS is very hard. I can tell you what have worked for me, this is my newest plan and it have been effective for 6 months now:

Exercise, but not to much, a walk a day maybe 3-5 km, dont overdoo it, it will increase the RLS.

go to bed at the same time every day

no electronics or tv in the bedroom

avoid sugar, artificial sweeteners and alcohol

take gabapentin 4 hours before bedtime, 600 mg

take gabapentin 2 hours before bedtime, 600 mg

(Always consult your gp before taking medicin)

My instigator was articifial sweeteners, i just resently found out.

Good luck, and I hope you soon will get relief and find your way throug it.

[williamghenry in reply to RLSHenrik]

Hello I totally agree with what you say

I don't take sugar sweeteners or anything like that

My doctor won't prescribe anything for me

I live in sheltered accommodation and no-one where I live is willing to sympathise with me so I suffer in silence because most people don't understand RLS

Best regards

William

[williamghenry]

Hello JezeeI am so sorry you have severe RLS

I have had RLS for many years It has got much worse since I had major bowel surgery about fourteen months ago

My Consultant said it would disappear in time Unfortunately it has not If anything it has got much worse

My doctor won't discuss It because he tells me my Iron levels are within normal levels

I phoned 111 two or three weeks because it was extreme I was telephoned back a few hours later The NHS person I spoke to asked me how did I know I had RLS even though I explained my symptoms to her She sent a report to me and my Doctor saying that in her opinion I had not RLS Not helpful at all

I sincerely wish you all the best in pursuit of some relief and explanation from this horrible condition which in my opinion seems to be ignored by the NHS

Best regards

William Henry

[Bantamdyno]

Hi, have you found the trigger points for rls.Look at my posts if you wish🤔