Severe RLS for years, add arthritis in feet, knees, hands, hips etc plus spinal scoliosis such that long term mild depression has escalated and now so severe I have agoraphobia, wept in the middle of my local supermarket, and now researching 'painless suicide' on the web which keeps steering me to the Samaritans! Desperate for help - GP won't prescribe antidepressants. Can't go back to him, I feel distinct lack of empathy or knowledge of RLS. Someone mentioned Bupropion as a possibility - is there much evidence that it can be useful for RLS victims? So tired of spending my days weeping on the carpet, would appreciate any suggestions. Yes, I have considered jumping off a cliff (easy, I live in Cornwall) but too much of a coward.
Could Bupropion work?: Severe RLS for... - Restless Legs Syn...
Could Bupropion work?
That is terrible if your GP to send you away in such a state. Can you tell us what medication you are on for your RLS?Are you getting sleep? Is your RLS controlled?
Uncontrolled RLS leads to depression.
Most of us have been in your place but if the RLS is treated properly, the depression will lift.
As soon as you let us know all medications you're currently taking, we can advise you on the next steps.
First might be changing your GP as he sounds terrible and I'll bet he knows nothing about RLS.
There is hope, don't give up. We will all be able to guide you.
Thank you for being so helpful and I'm sorry for not replying sooner, but have been trying to drag myself out of the mire, give myself a kick up the a... (not easy!) and have finally after much nagging by my family made an appointment to see my GP on Monday. I know my last ferritin level was 27 and I expected him to get back to me but the pandemic had a hold and I didn't want to be a nuisance at the time. Now, I'm making a list of points to raise, suggestions I have gleaned from wonderful people like yourself on this site, and attempting to impose more discipline regarding diet, eating regularly, taking supplements routinely and generally pulling myself together - I didn't recognise the person I had become and the awful dilemma of choosing to go 'down' or stay 'up'. Sleep deprivation is cruel, especially long term and the negative effect it has on all aspects of our lives robbing us of any hope of normality and causing withdrawal from healthy social interaction. Onwards and upwards I hope! Thanks again to you and everyone who has replied with such kindness and concern.
Oh forgot to mention .... I take 150mgs Pregabalin plus 2 x Codydramol and 2.5mgs Diazapam around 9pm. Then bed at midnight and between 2 and 4 hours sleep (max).
Your serum ferritin is way too low for someone with RLS. Your GP will say it's normal. RLS people a serum ferritin level of 100, preferably 250. Some need it higher- 350. There are many research papers on this.You can start supplements now.
Take ferrous bisglycinate ( gentle iron) EVERY OTHER night on an empty stomach with some vit C to help absorption.
Some UK hospitals are now aware of the link between low brain iron and RLS and will give IV infusions of Injectafer.
I know the Royal Cornwall hospital will do them. You can write direct but they'll request a GP referral.
Iron infusions dramatically improve RLS in 60% of recipients. The odds are good.
The pregabalin can also be increased as 150mg is the low average dose for RLS. Ask for an increase to 250 initially and then increase if needed to 300mg.
If you were ever on Ropinirole or Pramipexole before pregabalin, you may be someone for whom gabapentin and pregabalin do not work. Dr. Buchfuhrer believes that is due to Ropinirole/Pramipexole causing permanent damage to the dopamine receptors.
That happened to me and Oxycontin and pregabalin didn't help my RLS much at all. Like you, I still had severe RLS.
I suggest you print off the RLS assessment sheet which shows when and how RLS affects you. It will give you your IRLS score.
Show to your GP and also show the new Mayo algorithm. Ask for a referral to the nearest teaching hospital for an iron infusion. If the infusion works, it is cost effective for the NHS as you may not need medication.
Start the ferrous bisglycinate now and also ask GP for an increase in pregabalin.
If those don't help, you may need to switch to a low dose opioid.
Targinact is specifically mentioned by NICE for RLS. The average dose is 30mg a day taken 12 hours apart to prevent mini opioid withdrawal.
Many of us in the UK have now been prescribed low dose Buprenorphine.
I'm on 0.4mg and my RLS switched from 36/40 to 0/40. It does cause side effects for many so if you start opioids, watch for anxiety/panic attacks/ nausea.
Please don't even consider suicide. There is help and things will get better. Yes Bupropion can help but it is not prescribed in the UK. It is an antidepressant. Other recommended antidepressants for RLS are trazodone (Desyrel), moclobemide, reboxetine, tianeptine and agomelatine. One article reported on a patient that actually showed improvement of RLS with trazodone. As Joolsg mentioned, you should change doctors and do advise us of what medications you are on. Also, you should have your ferritin checked which should be over 100 and preferably 200. Be sure you get the actual results and not just your doctor saying it is OK since what is OK for normal folks is not OK for RLS. Have you read the Mayo Clinic Updated Algorithm for RLS at Https://mayoclinicproceedings.org/a... ? If not please do as it will tell you everything you should know about RLS.
Actually Sue Bupropion can be prescribed in the uk although it doesn’t happen that often compared to the more common anti depressants. I am currently taking it, brand name is Zyban.
Saw my GP today who has booked me in for a blood test on Wednesday and said he had 'seen something' about ferritin and RLS - at last!! He has suggested an increase of Pregabalin to 50mgs at 8am as well as 150mgs at 8pm and possibly adding in the antidepressant Citalopram but this is on hold and he will wait for my feedback on that suggestion. As it hasn't been mentioned here I didn't immediately clutch him to my bosom with gratitude and will ask for one of the alternatives you have mentioned. I can't tell you how thankful I am for everyone's support, it has really helped get me out the door and into the surgery instead of assuming I'm just being a pain in the proverbial. Thank you.
Citalopram has a 9% chance of worsening RLS symptoms. If you can't get Bupropion, trazodone is the next best. Reboxetine is less effective than the others and has more side effects. And since I wrote, I found some people said agomelatine made their RLS symptoms worse. On the pregabalin, I would increase the evening dose by just 25 mg every 2 or 3 days until you find a dose that works for you rather than jumping up more at one time.
Depression is usually short lived - still many months of depression is many months too many! I was depressed years ago now - before antidepressants were developed. I researched best I could, and started high dose B Vitamins. I still take them - 50 years later! Today I would add Fish Oil (a lot) 3x day, and would add any anti-inflammatory supplements like Curcumin 95 (for your inflammation and arthritis). Add exercise - even just long distance walks.
RLS - start at the beginning - iron status. Screw the pharma DA solutions.