I posted on here approx 3 months ago re. a letter I sent to my g.p who took 6weeks to respond even though I tried to get over to her how absolutely desperate I am for some help with my severe RLS She phoned , but said no the Temgesic and also Targinact. I explained it was on the web site of Guys and St Thomas hospital as registered for RLS and asked her to look at it. She said she would give some thought to wahat action to take and said she would ring on June 8th. Since then I have received a letter from a clinic called the Barberry which deal with sleep problems but there is a 12 month waiting list. When the g.p. rings on the 8th as she is so fond of saying no to whatever I suggest has anyone got any deals as to what I can suggest to her now.There is no way I can wait for 12 months with my Rls this severe. I can get no rest and hardly any sleep. At the moment I take 4/5 Tramadol which was good but has now lost its efficacy . PLease any ideas as to what she may say yes to.?
Still awaiting a solution: I posted on... - Restless Legs Syn...
Still awaiting a solution
I am so sorry to hear of your continuing battle to get help.
I can't honestly say why this doctor is behaving like this, but I don't think it at all acceptable.
Unfortunately, it seems the things that you might persuade her to prescribe have already failed you in the past, i.e. dopamine agonists or gabapentinoids.
I think she should really be trying harder to find a solution for you.
I'm afraid that I only have a couple of thoughts for you.
One is that you MAKE her listen to a couple of quotes.
The first is from the World Health Organisation's International Classification of Diseases (ICD 11).
"The symptoms are sufficiently severe to result in significant distress or impairment in personal, family, social, educational, occupational or other areas of functioning, (e.g. due to frequent disruptions in sleep)."
The second quote is taken from the UK National Institute for Health and Care Excellence CKS for RLS (2020).
And the CKS refers to the orginal source of this as being the International RLS Study Group
" significant distress or impairment in social, occupational, educational, or other important areas of functioning by their impact on sleep, energy, daily activities, behaviour, cognition, or mood."
The NICE also identify the following complications of RLS.
Sleep disturbance
Anxiety and Depression.
Increased mortality risk
You may even mention suicidal iudeas, it isn't uncommon for people with severe RLS.
The other though I have is that you contact a patient advocacy service.
I am currently being supported by such a service who are helping in some practical ways.
What services are available depends on whereabouts you're living.
Thank you for your reply Manerva I have now found out that there is an advocacy service locally to where I live so if my g.p has nothing for me when she rings on the 8th I shall certainly use it. I am really grateful for your other suggestions too.
I feel so sorry you, and I am angry on your behalf towards your non-supportive and I tend to think negligent gp. Could you switch gp? Is there someone to support and assist you? Children or a good friend? Or someone you can find through here or rls-uk? I found that support and assistance when visiting the doctor helped tremendously when I had my worst phase of severe and badly treated RLS.
But I am not in the UK and in my area of The Netherlands it is fairly easy to switch gp. Plus I was referred to a knowledgeable enough neurologist with easy enough access. I hope UKs NHS offers sufficient alternatives to you.
Sorry I can't be of more help.
As an afterburner: I don't want to get you on a route that you may be uncomfortable with. Just want to mention the option to you. Quite a few people have found kratom, especially red vein borneo, very effective for rls. Raffs, thedohdahman, dougg, involuntarydancer, myself and recently joolsg. Like buprenorphine (Temgesic) it works on three opioid receptors, partially as agonists, partially as antagonist. Get in touch if you want to know more.
It works differently from the tramadol, that (partly) works on the dopamine receptors. Hence the potential for augmentation on tramadol. Which I assume is happening with you.
Thank you for your reply LotteM . I have heard of Kratom before from this forum. I feel a bit afraid of trying it however. How do you take it ? Do you make a tea or can you get tablets and also is it expensive. I would hate to find something that would give me a more normal life only to find I can’t continue with it because of the expense. Again, thank you for taking the time and trouble to reply, it really helps.
I bought the measuring teaspoon and started out with 1/4 teaspoon. I mix it in half a small glass of boiling water, stir and then add sone cold water to get it to drinking temperature. Stir again repeatedly and gulp it down, wash down with some more cold water. At small amounts not too foul.
Smallest amount to buy is 50gram which costs 11-15€. Of you buy larger amounts it is slightly cheaper. Plus postage. I started out by buying 100gram red vein borneo plus a measuring spoon. I find it not cheap, but also not terribly expensive for what it achieves: control of rls symptoms. You will slowly have to experiment with amount needed and repeats of doses. As ever: try to find the lowest effective amount and try not to increase. If you find it t works for you, you should add one or teo other strains and rotate. I changed about every week.
I assume you have investigated the iron deficiency contribution to RLS.
hopkinsmedicine.org/neurolo...
Yes I take iron tablets. Two every other day with vit C. I requested a iron infusion but that was another thing my g.p. said no to. Thank you for taking the time and trouble to reply.
I take pregabalin which seems to work for me. I rarely take any during the day, keep for the night cos sometimes my RLS wakes me up. I take one about 9 pm and the other during the night. I saw an article in a magazine years ago and took it to my GP as they looked upon RLS as a nuisance not a condition. Good luck
Thank you for your reply.
Hi bedith6 sorry to hear about your troubles. It took me quite a while to find a sympathetic GP who was willing to engage in properly discussing solutions. This is the key. Now I’m able to do my own solution testing using guidance from this site. My GP doesn’t always say yes to new treatments but she is open to suggestion and will do her own fact finding when I mention new or untested solutions before making a decision.
Reference LotteM’s mention of Kratom. I acquired some after messaging Joolsg. I tried it for 3 nights instead of pramipexole and it worked well. I was a bit anxious and down in the morning but slept well. I felt relieved that I had found another potential option that I may be able to work into my overall solution. Note I only took a low dose and will use it sparingly since it is not a thoroughly tested drug.
I wish you all the best in getting the help you need. Don’t be afraid of making a nuisance of yourself and using every means available to make your point. Manerva, LotteM, Joolsg and involuntarydancer and others have provided well researched guidance for me in this regard.
I do thank everyone for taking the time and trouble to reply, it really helps. The trouble is that since COVID doctors aren’t seeing people face to face unless they have to and I find it difficult to get over to her over the phone just how distressed I am and she really doesn’t know anything about RLS
I've added skullcap to my tramadol and am having good results for now. I've gotten more sleep in the last week than in a very long time. I use American skullcap but I'm sure Chinese skullcap is probably good as well. Blessings.
Hi Rosyrestless1 can I ask what dosage of Tramadol you take and how often? What does the skullcap do for you?
Between 100 and 200mg nightly. The skullcap is antispasmodic as well as a mild sedative. It seems to increase circulation and added to tramadol I have very little movement at all and especially I am relieved of waking up every hour or two. My rls is idiopathic and not usually relieved as much as mitigated, so I am hopeful that relief continues 😊. My case is severe and I have had some form for 35 yrs.
I looked up Skullcap and it says for cats and dogs is this correct or is there a different one that I have missed.
I've never seen veterinary usage personally. Skullcap is from a perennial plant in China and America and has long been used in Chinese medicine to treat several ailments. It is anti inflammatory and anti spasmodic. It's used for headaches, convulsions, insomnia, neuropathy etc.
Thanks for your reply much appreciated.
Gps have forgotten the rules of first aid left school when they to school no idea of real world first time they suffer it’s no problem for them time they where made accountable for there lack of care
I started taking 50 mg of Tramodol around 2000. Gradually went to 200mg by 2015. 200mg has been working well for me and my biggest concern is convincing my new doctor ( recently moved to different state) to keep prescribing it. Because it’s considered an opioid some doctors want to limit the amount they prescribe.
Hi Bedith,Sorry to hear that your doctor is being so negative. My wife Mrs P has been taking Temgesic 200mcg successfully since October 2020. It 's been a life saver while she was weaning off pramipexole and now she's started taking low dose gabapentin to help with the night time RLS breakthrough. Temgesic is particularly effective for RLS and has minimal side effects.
Her doctor at the local practice sounds much like yours. Knows nothing about the suffering associated with RLS and refuses to be imaginative or helpful with prescriptions. Things changed when my wife deliberately avoided the usual doctors and made an appointment with a young locum. He referred her to a Consultant in 'Healthcare for Older People' at the hospital. She was a breath of fresh air. After a couple of regular appointments, Mrs P's pramipexole weaning was getting unbearable and we sent her a long email letter describing the RLS suffering and evidence for using Temgesic, along with a fairly harrowing video of night time pacing.
She was very responsive and prescribed the Temgesic immediately.
There are quite a number of RLS sufferers in the NHS on Temgesic and also in Europe, Australia and America, so I don't really see why your doctor won't give a good explanation for why she won't prescribe it.
In a way, having to wait 12 months for the sleep clinic may be helpful. It's far too long for you to have to continue in your current state so your doctor will have to come up with an alternative treatment.
I would ask for her email address and say you'd like to send her evidence of other treatments. This will give you the opportunity to send more emails and build up a case for referrals or treatments and can't get lost or mislaid. People on this forum can provide plenty of useful
Mrs P is in her mid 70s and I believe you are older. It astonishes me that our doctors don't try every means at their disposal to alleviate the foul suffering of refactory RLS in older people. They worry about dependency and addiction. So what! at your ages.
Mrs P recently tried kratom but found it kept her awake through the night and didn't really help reduce the RLS. She only took a half teaspoon for 4 nights and gave it up. I wouldn't mention it to the doctor though!
Best of luck and please let me know if you'd like evidence for Temgesic/buprenorphine.
Hello Puzzler1 I was reading your post while waiting for my g.p. to ringShe is still adamant that she cannot prescribe Temgesic as she is not allowed to. I have told all about the fact that other people in U.K have but she said it must always come from a specialist not a g.p. She won’t prescribe Targinact because she says more people in the USA have been killed with it than have died in motor accidents. However she is going to see if any of her colleagues will prescribe it. In the meantime she suggests I try Pregabalin so I suppose for now I’Ii have to go with that although Gabapebtin didn’t help. Thanks though for your advice I hope Mrs P has some peaceful days and nights
Hi Bedith, Sorry that your GP wouldn't co-operate. It amazes me that these GPs say they can't prescribe this or that but don't arrange for you to see a consultant who does have the authority to prescribe them. Do they really just want you to continue with 2nd best at your age when they have the power to refer you. I'll never understand the NHS mentality.
Hopefully the pregabalin may give some relief. My wife has just started with gabapentin in addition to the temgesic and it's helping. She's hoping it will become more effective in the coming weeks as it reaches full potency. She's taking 4 x temgesic and 3 x 100mg gabapentin. I'm thinking that a combination of drugs may be a better bet.
I don't know anything about Targinact but for your doctor to quote such crass statistics about road deaths speaks volumes about her attitude.
I would definitely approach a different doctor or locum if you can and hopefully get an alternative opinion. Perhaps you could ask your local hospital if they have consultants for Healthcare of Older Persons as we have at Exeter.
Let us know if you need help with evidence to send onto a doctor or consultant.
I know from my wife's experience how bloody awful this disease is. Try and stay strong.
Hello puzzler1 On enquiring about the healthcare for older people I now learn it has recently been closed in this area can’t think why when there are more older people. However some hope on the horizon the g.p. has referred me to a sleep clinic and I have had a phone call from them to say they are going to try to get me. An appointment for July. I worry about putting weight on with the Pregabalin but will have to watch what I eat as I do put wight on easily As I said in my letter to the g.p this condition is too often trivialised when in fact if you have it severely it is up there with some of the worst things anyone could suffer from.
Good luck to you both
I am having steady relief by adding Skullcap (up to 3 grams nightly). I too have been on tramadol for some time and have been experiencing a loss of effectiveness with tramadol alone. There are two versions, American and Chinese skullcap, both seem to work the same. It is quite sedating and relieves the rls for a good 5 or 6 hrs of, jaw hanging open, sleep. Best sleep I've had in three full decades or more. I hope you find relief.
Thank you I will try the skull cap and see what happens
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