I'm trying, this morning I just couldn't do it anymore.... can't stop crying, not living just existing........I wish I had the power to do it but I don't think I can......wish I had the guts to just leave.
I'm trying to stay positive - Restless Legs Syn...
I'm trying to stay positive
39 Replies
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I found I could not take any of the "go to" meds for the RLS. I take a slow fe iron pill about 3 hours before I plan on sleeping, along with the Gabapentin. I also take half Xanax to enable me to sleep. The Buprenorphine worked for a few months and I was taking a very low dose, but have noticed I itch terribly if I take more than a quarter tablet. The iron has worked wonders, but ONLY IF I watch my diet. If I eat or drink something I shouldn't, then nothing works!!!! I have to therefore be extremely diligent. I have noticed if I spread Biofreeze, which has menthol, on the areas that I feel the sensations, it will oftentimes calm the nerves down.
Before I got my symptoms under control (and I say that loosely), I wanted to also give it all in, but I kept trying and trying different things, and found an understanding doctor, and just was bound and determined to find my "sweet spot" of med combinations and food triggers to avoid, and it's taken years. Don't lose heart!!!!! We are here!
It’s horrible I’m a nurse had this for a long time but has gotten so severe I don’t sleep for days I cry I scream one of my patients takes a Neuro patch for Parkinson’s and I noticed it’s for RLS as well. It really does work but you have to change it diligently. The problem is it leaves welts and itchy drainage blisters so I have to suffer with that or I have to suffer with not sleeping. I made an appointment with a neurologist that specializes that I haven’t seen them yet I wouldn’t wish this on my worst enemy.
Joolsg has some great thoughts!!!! I had to go back in time myself to discover that mine was caused by the doctor prescribing so many different statins, all of which I had awful reactions to, and which started this process. But, I also think mine is linked to Hashimotos and autoimmune issues. I am currently trying to detox my body to see if it helps!!!!
Kelly-that is awful! Order some red strain Kratom powder online until you can get the right help. It works in minutes and totally saved me when I was in your shoes. Hang in!
Welcome to the forum. You will find lots of help, support and understanding here.
Are you aware that a neupro patch is a dopamine agonist (DA) and up to 70% of people will suffer augmentation? The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. At that point you have to get off it and that can be worse than getting off heroin.
For that reason it is no longer the first line treatment for RLS and the longer you are on it the more likely your dopamine receptor will be damaged and the first line treatment which is gabapentin or pregabalin won't work.
If you decide you want to come off it and try gabapentin or pregabalin, post back here with the amount you are on and how long you have been on it and we can give you some advice.
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 or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. 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. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, 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.
KellyAs you're a nurse, start researching now. Doctors aren't taught RLS on the curriculum. There are a few who study it in depth and they all realised pretty quickly that dopamine agonists ( Ropinirole, Pramipexole, Neupro patch) actually feed the disease and make it much worse. Article from Dr Winkelman attached.
If you live near one of the US experts, do make an appointment.
Dr Buchfuhrer in California, Dr Ondo in Texas, Dr Winkelman in Boston, Dr Earley in Baltimore and Dr Berkowski in Ohio and Florida. Dr Berkowski has a brilliant website. He will no longer prescribe any dopamine agonists because they cause such severe RLS (augmentation).
Kath,
Can I ask when these electric shock senstations became really bad?
There seems to be something very different happening to you than just RLS and neuropathy.
Looking at your posts, it seems to have gone a bit haywire when you stopped your HRT suddenly 4 months ago.
I put "Stopping HRT suddenly" and " menopause electric shock symptoms in legs" in my search engine, and SEVERAL articles came up and all of them mention that electric shocks in legs are linked to low oestrogen and low vit B12.
I think you should ask for further full panel blood tests, including oestrogen and B12 to try to find out if the sudden shock of stopping your HRT, and the dramatic drop in oestrogen, has triggered a disconnect in your nervous system. The electric shocks are linked to sweats as well.
Maybe it isn't the neuropathy/RLS that's the problem.
Is there a good endocrinologist or menopause specialist near you? It seems that the usual medications that help RLS and neuropathy are not touching your symptoms, so there does seem to be something else that needs investigation.
Your low mood and anxiety will also be deeply affected by a sudden withdrawal of HRT.
For many women, HRT can trigger or worsen RLS, but can you remember what your RLS was like 6 months ago, when you were taking full HRT??
It's a wild stab in the dark, but it is worth following up with your doctors.
Sending positive, healing thoughts down under.
Kath, do you have anyone your end that knows how desperate you feel? Please tell at least one person and make sure your doctor knows - also do you think any particular medication makes you feel more desperate? This is important because I’m convinced that a higher dose of buprenorohine makes me feel upset, confused and suicidal- I say this because I have had chronic, persistent and severe rls ( including violent plmd and electric type shocks going up and down my legs ) since the lock down in the pandemic ( may 2020) so it is nothing new - and whilst I was upset and desperate before, I did not feel actually suicidal. A week after I put my buprenorphine up to 1 or 1.2 mg I started to feel severely depressed and yes suicidal.
Please try to keep a steady support line of people around you and think about how it would affect them if you were to harm yourself… and think about what drug(s) could be affecting your mood and ability to see things clearly.
The way you’re feeling could be drug induced - which gives another reason for not acting on it - since if you were on a different mix of drugs you might not feel like this at all -
All the best - I hope you can find a way out of the haze and a reason to cope xx
Kath, Rwall and Joolz are right, we are all here for you, I felt so sad just reading this, but I think we all feel for you and have been where you are at least briefly at some point.
Don’t give up, there are probably many routes left to be explored. Please tell your doctor all this and explore all routes. Also sending positive vibes to you … x
I can't add to the advice given here. Sending you love and a huge cwtch.x
Hi Kath, sending love and hugs- hang on in there 🥰
What all meds have you tried?
This is exactly how I felt only a few months ago. Saying it to people in this group helped me so much. Just knowing that others have a similar experience to me, made a huge difference. However, it also gave me the courage to go to my Dr and ask for antidepressants. I felt a real failure and also didn't want to put yet another drug in my mouth. However, for the past 6 weeks, I have been on 50mg per day of Agomelatin.. I feel so very much better. I am so pleased I reached out, please talk to a Dr, they will understand. Life is too precious.
Are you taking an antidepressant? If not, call doctor. I’m taking cymbalta. Horizant was giving me depression. Can’t say I’m jumping for joy, but the want to cry all the time is gone.
You are lucky. Cymbalta makes RLS worse for most. It certainly did me and my RLS was under control. (I took it for pain)
Everyone on here are available for support. Many of us share your feelings. Just know that things will get better. Sending hugs to you!❤️
I understand and feel your pain. This is what happens when your body becomes your worst enemy. But we must keep trying.
Oh, no; so very, very sorry! You might consider ordering red strain Kratom online, just to get some quick relief until you figure it all out. It stops RLS in minutes, although, per Joolsg above, we aren't sure what your true issues are. Hang in-kratom saved me when I had nothing else and thought what you are thinking!
• in reply toTeddiJ
It is illegal in Australia
Are you alright Kath???
• in reply toJoolsg
hanging in there, just existing still.......life sucks
Elisse3• in reply to
You need to see your doctor pronto. They should be helping you with your symptoms find out what’s going on. Please book an appointment take a family member with you or a friend.
• in reply toElisse3
I so keep seeing my dr and ringing specialists and they keep saying we will see what happens in a few weeks or we will be in touch.
Elisse3• in reply to
So sorry they are not more helpful. Have you told them you have had enough of living like this, have you told them how you are really feeling , that life’s not worth living be blunt with them make them sit up and take notice. Kept in touch on here members will need to know you are ok. Just having a rant helps people get their feelings out.
• in reply toElisse3
I have told them all that I don't want to wake up in the morning anymore.....they say ...no come on we will have no talk like that book in and see a psychiatrist...........sigh
Elisse3• in reply to
Jesus what rubbish they tell you it’s not a psychiatrist you need working what your symptoms are. Can you change doctors over in Australia? Find one who will see and listen and help with what is causing those symptoms. I don’t know how your health care works
• in reply toElisse3
I live in a small island state , the choice of drs is small, and I can't afford to fly to mainland to see one
TeddiJ• in reply to
I can't believe you didn't order kratom-you do not have to suffer like this.
She could get it and try it for her RLS but think she has more going on other than RLS from how she is describing her symptoms. Jools has given her good advice i don’t know if she has taken it up.
• in reply toTeddiJ
I can't !!! order Kratom, as I said before it is illegal here
TeddiJ• in reply to
You can order it online as tea from kraatje.eu. Thought I mentioned that. And sorry_ I misread and I thought you wrote that it WAS legal. My bad. But, it is illegal many other places and members on here use the above address. It is marked as tea/food.
Elisse3• in reply to
You probably can order it. It’s illegal in the UK aswell but plenty of people buy it and use it. Even just temporary
Hello KathandkellI have huge sympathy for you
I suffer from Ekbon Syndrome all the time especially at night
I had major bowel surgery in January this year Since them my Ekbon Syndrome has got much worse
My current doctor won't discuss Ekbon Syndrome
I have nowhere to go
I am in bed early tonight and my Ekbon Syndrom is awful itchy in my legs back and arms
I sincerely hope you can get some relief from this horrible condition
Good luck and my thoughts are with you.
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