To friendship on this great site

[Jelbea]

I want to thank all of you who supported me recently. This site is a really wonderful and friendly place and its members are all joined together by their suffering from a vile condition which can leave us devastated. We are all free to share our experiences of what works and what does not.

I have made so many links with you and I feel that you are really my friends even though we will never meet. It is therefore very sad to hear unkind things being said of some of our members. We all have our opinions and we all know that different things works for each of us. It is good to have opinions but not to force those opinions on others no matter how strongly we feel. This site must be kept as it always has been - a place to get much needed support, kindness, suggestions etc. Sometimes just a place to vent our upset and frustration.

I would like to give an extra word of thanks and appreciation to those of you who give very generously of your time and knowledge to help us all and a special word of thanks to Kaarina.

[Kaarina Administrator]

Thank you for your lovely, thoughtful message, Jelbea. It really is appreciated. 💛🌻

[DesertOasis in reply to Kaarina]

Muchas gracias Kaarina. I can’t imagine who Jelbea is referring to???

[Rayme]

nice post Jelbea! I wholeheartedly agree that this forum is not only a place for great advise but a wonderful and much needed support for those of us with RL at any stage, mild to severe. The kindness shown here is the glue for me, it's why I keep coming back to read of others experiences and feel understood. And the advise is invaluable! And yes, thanks to Kaarina!

[Simkin]

I 100% agree with everything said by you Jelbea & by you Rayme and I echo your opinions & thanks.

[Palamino]

Totally agree I've had alot of help from people on this site dont think I'd be here without it. Yes we all have our opinions and some are much more knowledgeable amd some just want to take something to get rid of this awful thing in the here and now and maybe dont have the time or wear withal to look deeply into it .

[Danni54]

I agree with everything you have said. I have been so desperate and didn't want to be here any more quite honestly but the help and support here has been amazing and I'm SO grateful. I'm finding my way now with Buprenorphine tablet's as I can't tolerate the patches and I'm hopeful that my body will adjust soon.Take care Jelbea and good luck with everything...especially RLS ! What lovely comments you made about this Forum and the amazing people who help us . Thank you for voicing how I feel! xx

[Jelbea in reply to Danni54]

Hello Danni54 - Thank you so much for your lovely response. I have been amazed at so many "likes" to my post. I just felt so strongly about our site as it has helped me so often.

I was on the BUP patches myself and, like you, they affected my skin badly and only lasted about four days. I was not allowed to change them more frequently so eventually I got in touch with Professor Walker who prescribed sublingual bup 800 mcg daily . Some folk are able to take their dose just in the evening but this did not work for me. Professor Walker told me to divide up the dose so that at present I take 200 at lunchtime, 200 at 6.00 pm and 400 about 10.30 - 11.00 pm. This had been working very well for quite some time but at present I am getting some break through so I have been adjusting the times to see if I can make it last better. My GPs will not even talk to me about taking this drug and in fact two of them shouted at me about it. I feel that one more tablet would be necessary for me. My dosage was never adjusted in the first year as it is suggested to do. I would need to get back to Prof Walker but it is almost impossible to get him at present.

Anyhow I hope this helps and I am so glad you are feeling supported as it is a very bleak place to be. All good wishes

[Danni54 in reply to Jelbea]

Hi again. The majority of the medical profession doesn't seem to understand what hell this is and where I am , most don't care which is so scary. My latest Dr. said that they usually only use Buprenorphine for terminal patient's but he is prepared to see how I get on for the next 2 week's !At the moment, I don't feel real and my leg's keep going numb and my balance is haywire. Did you find that you felt very spaced out when you changed from the patch to pill? Jools said she felt wiped for 2 week's so I'm hoping that I will feel better in a week or so because I don't like this ! My leg's have been jerking through the day so I take ½ tablet at 3 p.m. The Dr. is leaving it up to me as to what I take and when.

I , SO, hope that you get to see your Prof Walker soon and I really sympathise with you. I read on here that Buprenorphine is in short supply. I hope that we manage to keep getting it because I went through withdrawal last year when Dipipanone was stopped abruptly with no programme put in place to help me. Not nice !!

Do you find going for short walks helps or can you not manage that ? When we have multiple problems then it's difficult isn't it ? I managed to go for short walks 3 or 4 day's a week on the patches but I'm so shaky just now that I'm worried that I might fall. Not for the first time ! I used to walk our darling dog's for hours but now can't even have a dog ! Grrrr!

Take care please. People on this Forum are so brave and so kind and I wish there was a cure for all of us !

Hugs, Danni x

[Jelbea in reply to Danni54]

Hi Danni = I shall private message you.

[Pippins2]

I agree this group is very special there's so much knowledge and support Through this forum I have made friends and have been lucky enough to meet up with 3 members in "real life"