I have been sufferings from chronic fatigue for much longer. Though it was up until around 2 years go manageable. I could work. Then around 18 months ago when My RL augmented, after several nights with no sleep,I had to walk out of my job.
I was given an Oxy script and could then sleep, albeit intermitantly. The main thing I could be in bed all night !!!!
Major depression ensued and couldn't work. Lost interest in everything.
18 months down the line still low mood sometimes. But the chronic fatigue is worse. On a good day, I have the energy to have a bath. but have to lie back down after woods. It seems to be okay if I am lying down. When I go to stand up I get lightheaded and have to lie back down.
I started SI B12 8 weeks ago but dosnt seemed to have helped. I was v. low on the test though so am deficient.
Does anyone out there have a similar experience. I will add that it wasnt as bad as this during the first year just over the last few months .
Be very interested to hear your thoughts and own experiences
😊
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smilingjane
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Hi Jane, I experience something similar, although not the same. And maybe not as bad when I read yours. But I do find it a struggle and hard to accept. And somehow comforting to read about your experience. Like you, I switched to oxycodon then oxycontin (slow release oxy) about two years ago after trial and failure with ropinirole (fast track of augmentation) and ineffective gabapentin, and more. I was exhausted before the legs kicked off big time (burnout as they say here), and the 2-3 years with badly managed RLS didn't do much to improve that. As the oxycontin proved and remained effective during the night I hoped for recovery of my energy levels. Nope, it didn't. If anything, my symptoms have become worse.
During each and every day I feel constantly tired, lacking energy to do things. I have to constantly force myself. I can then walk or go for a bike ride, do odd small jobs around the house, but not for long (2-3 times 30min at most). In between I can't find rest. Too tired and too restless. If I lie down it only gets worse within 10-20min, as the urge to move presents itself. I had to stop working a few years ago, couldn't concentrate, and lost my job a while after.
I only take oxycontin at night (5mg at 7PM and 5mg at 9PM). IA few weeks ago I started to add some kratom during the day (2-3x) to boost my energy. It helps making it bearable. Only in the evening, between about 9-12PM I feel more or less normal. So now(as of today! as it happens) I am considering adding the same dose of oxy in the morning.
Anyway, long story short, I blame the oxy. Or maybe taking it only in the evening, causing mini-withdrawal during the day. Although that wasn't so obvious in the first about half year to year that I have been taking it. I am hoping to switch to buprenorphine or otherwise methadon soon. I am in The Netherlands, although the opioid thing is starting to gather momentum here too.
Sorry to hear about your fatigue issues. All these side effects of RLS and the medications can be too exhausting. I sympathize with you.
You say that when you lay down your RLS begins within 10-20 minutes. Are you talking about the afternoon or evening ? How well controlled is your RLS ? I am sorry I could not quite understand it all clearly.
This story sounds horribly familiar, Lotte, but I think you have not told it before, or not so fully? So sorry, I empathise.
My own experience, which is very like yours, suggests that a small morning dose, or two tiny daytime doses, may help. There is a big grey area in here, of course, and lurking danger, but if you spread the dose and do not increase it overall, or increase it very little, where is the harm - apart from the harm we are already aware of.
When I became aware that my own symptoms were possibly caused by opioids, I tried a teeny-tiny daytime dose, and it worked pretty well. Pass it by your doctor.
If opioids are all we have left then we must try to make them work for, and not against, us.
Thank you Parminter, this is very helpful and most appreciated. Actually, I have discussed the issue privately last night with two other members, and they offered a similar advice.
More precisely, my daytime problems may indeed be due to too large dips in the levels of the oxycodone and its derivatives in the blood/body. And we know that the Oxycontin often not lasts the full 12h it is supposed to last. To cover daytime symptoms like mine, whether resulting from mini-withdrawal or not, it seems advisable to spread the doses evenly over the day. I have the permission to slightly increase my current dose when needed. Thus, I am aa of today, going to take 3x5 mg if Oxycontin, each 8h apart. Apart from covering daytime trouble, I hope it suffices to cover my severe nighttime symptoms. In te past, 5mg wasn't enough. But with the equalled-out dosing over the day, maybe (most likely?) blood levels of active ingredients will be slightly higher than with a single dose in the evening.
I hope that if this works, I will feel less exhausted and the severity of my symptoms will lessen a bit. As in the recent weeks/months I seem to have been in a vicious cycle. Will keep you posted.
And Jane, sorry for hijacking your post. I really hope this discussion is helpful for you too. Do you mind sharing your dosing time schedule? There may be room for tweaking too.
Not at all. I appreciate all the info I can find 😊
Until 2 months ago, I was on 15 MLS every 12 hours. It never completely lasted the 12 hours so I used to take 10 mls then follow with 5mls 2 hours later which helped a little.
However my endo thought Amytryptaline would help with my restless legs and so he put me on the liquid Oxy. The idea being that I tiitrrated down gradually to 0 over a month. It didnt work, (of course, Dont know why I thought it would !)
So my GP is ringing me this am to discuss what to do going forward. either pills or liquid if we decide on a dose that cant be achieved with pills.
I suspect I will also get the pep talk and discussion we all dread.
I will get back to you a little later today with the plan for my revised dose.
I do hope you get things sorted with your GP for your revised dose. And that you reach a stage soon where you can be relaxed enough during the day to rest.
Depression is listed as a side effect of oxycodone.
However, I noticed you are also B12 deficient and on thyroid meds- chronic fatigue is common in hypothyroidism.
You may have to review all the meds you are currently taking with your doctors and consider tweaking them to see if it makes any difference. Get full blood and thyroid tests and go through them with your endo and GP. Co
I am on oxycontin and don’t have fatigue as a side effect but it is common.
Out of interest, what dose do you take and do you take it day and night?
I am currently seeing a private endo, and having a raft of bloods taken in a few weeks.
He has started me on extra Thyroid meds and hes the one that discovered the B12 deficiency, so I will take a list of thoughts/questions to him when we meet in October.
I think the depression is secondary to the CF. I think because I had CF before starting Oxy,that there is something else lurking undiscovered. A friend mentioned Lymes disease. I will look that up.
Thanks again for your response and I am pleased that you havent got CF 😊
I’m on 25mg of OxyContin ( extended release oxycodone). I take 10mg at 10pm, 10mg at around 9 am and 5mg at around 3am.
My daughter has hypothyroidism and had really bad fatigue on T4 - the UK is really bad at treating hypothyroidism- same as RLS.
She did a lot of research and eventually saw a private endo and was prescribed T3 as well ( a lot of people have reverse T3 if they take only T4). As T3 is only available on private prescription she sourced NDT ( combination of T4 & T3 from natural animal sources) cheaper from Germany.
The change was dramatic- no more fatigue, no fainting or panic attacks, no weight gain, no hair loss. A lot of endos refuse to accept that thyroid patients need T3 as well as T4 so read up on it on Thyroid UK.
Hope you can find a combination of meds that works for you.
I had heard that. It seems to be the good old post code lottery. My daughter couldn’t get it on the NHS and so the private prescription was £300 whereas the cost from Germany was £150. As she is on a low wage she opted for the German lower price. I know certain NHS trusts have included T3 now but London SW isn’t one of them. So annoying.
I think she stated to feel the benefit after around 2 months so keep going. There’s also room for tweaking the dose and the ratio of T4 to T3.
She’ll have to make sure she can buy about a year’s supply before we crash out of Europe or I can ask friends in Ireland to buy it and post onwards to us! You’re right- it’s so unfair. She really can’t afford the cost. Hopefully more trusts will add T3 to the list of approved meds.
She is very good at self regulation- she listens to her body. She was fobbed off by GP for YEARS after panic attacks, fainting, dry skin, hair loss, weight gain, chronic fatigue. She paid to see a private Endo and he confirmed she had hypothyroidism. Seems GPs are rubbish at endocrinology as well as RLS. She tweaks her meds, observes the result, reports back to endo and he basically agrees with her. I think we know our bodies better than specialists most of the time.
I’m sure you will be able to work out whether you need to increase T3. The bloods are notoriously difficult to read, even for the expert endocrinologists.
I am on 10ml starting and 75 of Levo. I am tempted to put the Levo up to 100, in fact I did for a couple of weeks. But as this is a new endo and my b.tests are due in 4 weeks I think I will wait and see what they say.
100mcg T4 & 25mcg T3. It’s NDT from Germany called thyreogland.
If you up the T4 maybe you should up T3 as well in the same proportion or the reverse T3 may stop the T4 working.
I think most NDT formulas work on a ratio of 4:1 so 4 parts T4 to 1 part T3.
I don’t know whether that applies to the synthetic levothyroxine and T3. If the synthetic versions don’t help you could consider trying the older NDT as many people do better on it than the newer synthetic versions. I know my daughter didn’t get on with Levothyroxine.
I see from your bio you have suffered from restless legs for many years.
Me too.
I take Oxycodone because it is the only drug that works for me. I have tried all the drugs that GPs tend to offer when people present at surgeries with restless legs.
They didnt work for me and made my condition worse. It spread to my arms and affected me through the day as well as nighttime.
What are you currently taking and does it help your restless legs?
I am taking premipoxoletwo at night the dose is 0.088mg even after this some nights I take cocodamol which got side affects like constipation then for that I take laxative this is going on for long time some days I get really upset my husband passed away 15 years he used to massage my legs I have tried gabapenton ametriptyne doc said I can take high dose of premipoxole but I don’t want to try more you take more your body asking
As you are having difficulties with your medication and restless legs it is best if you post a question of your own on here. If you just tag along under my post you wont get the responses personal to your particular query.
If you post a question about yourself and your situation one of the experts will get back to you to try and help.
Is it ok to take premipoxle for rest of my life or is there any cure for Rls any surgery can help . I am so desperate for any surgery may be legs chopped please help me my husband passed away long time .i am suffering alone with this .i don’t want to bother children everyday with same problem now in lockdown can’t see doc personally 😥
It would be better to start a separate post on this.
Pramipexole is notorious for causing augmentation- read the pinned post and do not increase the dose.
Gabapentin or pregabalin might be better for you but they won’t help RLS if you’re suffering augmentation.
Where are you? In the UK? Have a look at the video on the main RLS-UK page on Augmentation.
I’m sure your children would help if you explain to them that the drug you’re taking is not helping and you’ll need their help to print off information to show to your GP about augmentation and how to get off pramipexole safely.
Hey smilingjane, how you doing? Damn! How are you able to be on Oxy? I am the most 'chronic fatigued' person I know. I get less than 8 hours of sleep a week! Seriously, a week! Chronic fatigue will kill me long before my poor eating habits, my less than social drinking lifestyle, depression, anxiety, etc. But without a doubt, RLS will have me question my sanity every day. 20 years on ropinirole has saved my life but the augmentation is "to die for" meaning it's so bad you want to die! I just take my ropinirole and then sock my legs with my fist for 45 minutes until I fall alseep. And to add to the perpetual feeling of doom, this damn Covid-19 is just one more kick in the ass! What the hell!? Bottom line...you are not alone!
I think it would be a good idea to start a new post requesting advice and help for your symptoms. There are experts on this site that can go through other possibilities with regard to alternative medications to help you.
Ropinerole is known to make RLs worse and cause augmentation. Sounds like you need to look into changing your meds to get relief.
I was prescribed Oxycidone as a last resort after trying all the usual pills prescribed for RL. I was suffering sevear RL which had spread to other parts of my body and it was affecting me 24/7.
Oxycodone works for me and I am sure saved my life.
Please look into this further. You dont have to suffer.
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RLS seems to be mainly in my arms now
New advice 
Augmentation and Pramipexole
Rls living hell
