Here we go again

Yet another night of hell, so far 3 hours of sheer hell if begging would get my feet amputated I would do it willingly. I can't cope with this

[Goingthruhell]

When i had my first specialist app he straight up asked me straight away " if i could chop ur legs off to help ease the pain would u let me?" I blubbered and said "yes pls do it now" from that moment on he knew it waz severe...

[Mopsy1950]

I feel so sorry for you ,all I can offer is a big hug and hopefully you get it sorted

[LoisTonya]

Life is such a struggle with rls, severe back pain, heavy weak legs and the side effects of ropinorole that, at age 80, I'm ready to bow out.

On the good side I had an MRI scan yesterday looking for a spinal cord lesion. At the moment, I'm living in hopes something will be found that can be put right.

[Goingthruhell in reply to LoisTonya]

Good luck....im sorry ur hving such a hard time...i find it almost impossible to put into words the pain for someone who hasnt had it so severe...the anxiety i feel waiting for the next pain ep which i kno is inevitable and feels like torture....i joined this site hoping that someone on here had the answers...the perfect med combo that would cure me but no...instead i got connected to heaps of ppl who suffer the same...we r all different...on different meds but our struggles are the same so please dont bow out yet...u are special... u are loved...

[LoisTonya in reply to Goingthruhell]

Thank you for your support

[Hidden in reply to Goingthruhell]

I TRIED to speak to a pain specialist about it and he told me RLS wasn't his field! I mean the pain of RLS tops all others I have yet I can be medicated for them but not RLS!!!!

I think personally speaking had I not been married with children I would have killed myself already!! The pain and discomfort has been that much. THAT SAID - things although not great are now much much better and I can tolerate things now.

I had wanted my legs amputated for years thinking if they were gone surely there would be relief but now its in my torso and arms I think cutting off the legs would be a waste of time

Stay strong people no matter how bad it is there is at least some relief available.

[lambrusco21 in reply to Hidden]

Hi there i feel the same way. You said that you can tolerate this now. Have u any idea why? Thanks.

[Hidden in reply to lambrusco21]

I have tried a number of strategies that seem to work together:

1) Gratitude - this is the number one approach I use it hourly. No matter how bad things are there is always something good. I may be in extreme pain and fatigue but I am grateful I am in my own home surrounded by my family. That sort of thing.

Kick start gratitude by sitting down every morning for a month and writing 10 things you are grateful for - try not to repeat. Its a tough one but it really makes you focus on and see the positives. Some of mine were my kids, home, sun, sky. Write down what it is why you are grateful for it and spend a moment in thanks for it.

2) Think wit! My life has been made a nightmare by the RLS and I am at the stage where I think F*K YOU I will not be beaten. I now have a battle on my hands and I will go down swinging.

3) Stop comparing to others I would look at people who could sit still and relax and a little part of me hated them for it. "Why can't I be normal?" I would lament. Well I don't know what other crap they have to deal with and I may be quite happy to stick with my RLS if I knew what they had to suffer.

4) DRUGS - Take all you can get! I know this is not going to go down well with some but I am so pissed off feeling this way I will take whatever I can to relieve it, (BUT an important point watch carefully work with a Dr if you can because you don't want an addiction or criminal conviction to add to your woes).

5) Do stuff you enjoy - if life is shitty with RLS improve it in other areas. Hobbies and distractions are vital.

6) TALK, TALK, TALK, TALK, TALK - when you are down to the level of wanting to kill yourself, whether you seriously intend to or not, you got to talk to someone. When going through pain our life and vision narrows too much and we miss reality - another can help us see straight.

7) Diet Gluten and Dairy about bad for us as is all junk food which although may not affect the legs certainly depresses the mind. Eat healthy and stay hydrated. Vit supplements here too if needed.

8) Vitamin D deficiency can cause depression and for me I would have paced through the dark of the night only to sleep during the day I am sure there are other NightWalkers about here maybe a vitamin D deficiency could be making things worse.

9) HEALTH UNLOCKED. I come on here most days and try to help someone that way my curse can bring ease to others.

That's about it if you need someone to chat to PM me, it is hard suffering alone, (although remember you are not alone here)

Take care.

[Goingthruhell in reply to Hidden]

U sound very wise and informative.... i agree with all uv said about staying in the best shape mentally to be as strong as possible to cope during the hqrd times....mindfulness.... gratitude....affirmations(i hv a wall full) hobbies...gentle exercise... stretching (my version of yoga..lol) all that plus the plethora of meds and drastic dietry changes seem to help me stay pretty positive majority of the time...

[Hidden in reply to Goingthruhell]

For me it takes a lot of things all at the same time.

I think for people like us with chronic debilitating conditions, especially ones like RLS that are not understood, need to re-evaluate our suffering!

My suffering has lessened considerably, (psychologically not physically unfortunately), because I now use my suffering to 1 understand peoples suffering and myself more and 2, to help others. To suffer and just suffer with no benefit to it is depressing, if I know I can use it to help others then the suffering takes on a different shape.

Now saying that when I am rolling about the floor in agony that can all go out the window but for the most part it helps me put up with it all.

I also tend to listen to a lot of Alan Watts and find great solace in his words of wisdom:

youtube.com/watch?v=QClQjPr...(Not working as expected?)

that is 4 mins on pain and suffering. There are so many more great talks on youtube.

Take care.

[Hidden in reply to Hidden]

That sounds like good advice thank you

[Pippins2]

Jenny the Ropinerole is obviously not helping so time for a change of meds Remind me what you have tried so far and any meds you take for anything else including over the counter . By the way chopping off limbs is not a good idea as there have been cases of phantom RLS in those that have had amputations, imagine not being able to move them! ! X......Pipps x

[SuperMNew]

Jenny, look into Mucuna Pruriens. It is a natural BEAN (with all the vitamins and minerals of beans) that supplies L-Dopa WITHOUT the side effects of drugs. There are some interesting long-term studies done with MP, and it works! It is an ancient healing method from India used mainly for controlling Parkinsons' symptoms. It works for RLS as well. I am on it now and get four hours uninterrupted sleep from the dose I am taking. (I've figured out what works for me.) Look for the Mucuna EXTRACT, containing a high percentage of L-Dopa. I ordered from powdercity.com/products/muc..., which have the pure extract powder. I don't waste money on capsules. They take too long to take effect. The powder is very cheap but effective. It is 98% L-Dopa, but their suggested dosage is for maintaining a "pleasant feeling during the day." That was not nearly enough for me so I experimented, and 1/2 tsp. of the powder lasts me four hours. Then I must take another dose that will again last me four hours. There are no side effects! It's all natural L-Dopa which is what drugs are NOT. Drugs either mask the symptoms or fool the body into thinking they are L-Dopa. And we all know that most drugs eventually quick working and have nasty side effects.

You can take both ropinirole and mucuna at the same time. At least I did until I could wean myself off ropinirole. More of the extract powder may last longer, but I have been okay with what works for me. I am now moving ahead with trying the Relaxis pad to see if I can eliminate RLS altogether.

God bless you, Jenny! I've been where you are, as have a lot of us. I was determined to find a natural L-Dopa, and that is what Mucuna Pruriens is. Do a search for Mucuna Pruriens and see what you find.

[Hidden in reply to SuperMNew]

Thank you I will give a try

[pmarland6833]

Im so sorry ~ you sound like me at times. Try to feel comfort in knowing your not alone.

[charjemison]

Have you tried running in place, stretching, knee bends, jumping jacks, really anything to wear the muscles and nerves out.... My RLS is from medication, and is recent so this crazy excercise in the middle of the night is the only thing that interrupts it. It takes a few times, then I collapse back into bed and pass out ..... I have such compassion for those of you who suffer years.. .. ..