Pain Clinic

[pearl76]

I have been referred to pain clinic in February. First day was about general information and we have to stay seated for 2hrs 1/2 listening to explanation and strategies to cope with pain. They say you can move around and don't need to be seat all the time but I noticed people were just there seated and starring all along from beginning to end, how do these people do? I guess they were collapsed in bed afterwards! I felt like I should be listening to that all information from a hospital bed, honestely! Or at least comfortable sofas with cushions.. I left hospital devastated, feeling awful! I know it is the way it is done, I know I have to go through this process to be able to get more help but, OMG! If you are not in pain you have no idea how every little detail of your life matters. That day meant that I had to arrange a paid baby sitting for my children when back to school, I also had to arrange a friend to take me there and pick me up and I also paid her. It also means that I missed my rest and then the rest of the day was dead in my bed in exhaustion and then the next 2 days and pain increased.Well, I still had hopes for a better day when they offered me an individual assessment 2 weeks later. Have been there again, same deal, but at least was during school time and didn't need to arrange for a bb sitter. I again was assessed for 2 hrs,( talking from a chair) and the Occupational Therapist said that my case was complex and I needed to be back there for more assessment but then just after Easter! Oh! I feel discouraged. I just want someone to offer me some real help, anything, even a injection that could knock me down, but something pratical that can make my life better...I wont give up, I actually planning to do all the way for the Pain Clinic just to check what type of help people are getting from the Pain Clinic. I was shocked by they way they think we can cope it. I will let you know later how I am feeling about and what kind of help I have been offered. Can't stop thinking about a hospital just for people with Fibromyalgia, ME,CFS and so on... A place where people would be genuinely looking forward to help us, give respect and make us feel human again.Hope I haven't discouraged anyone...just sharing my experience...feeling frustated, I a mum of 2 wonderful little kids who deserves better than what I can offer. Ariadne

[Hidden]

Don't ever feel you are failing your children .... Yes you have fibro and maybe other things but the fact you feel you are letting them down shows what a good mum you are , worrying about them... And believe me when they are older they won't feel that you have been a bad mum.... They will remember all the times you were the for them with hugs and cuddles. I just have one son I had fibro before I had him ... He's nearly 16 now and when I say I'm sorry I haven't been able to do so much with you.. He looks at me like I am mad and says but you are always here and you always come to my school.... He doesn't think he missed out in anything ... I am sure your children will be exactly the same.....

I went for a pain clinic assesment and was refused a place saying they couldn't offer me any better help than what I had in place already... But then I do have other problems besides fibro.... But I do get injections for my neck and shoulders for muscle spasms due to fibro they are done 3 monthly at my local hospital in and out in a morning

VG x

[pearl76 in reply to Hidden]

Thanks a lot for your warming reply. Yes I believe my boys are happy but I know there are missing out... What Can I say, this is life.We all have different challenges and they will have to learn from early age that life is tough! Fibromyalgia sounds to me like my life tragedy as I was very active before, I was married to a magician, doing fun magic shows to children and I never thought that all my fun was going to be disappeared like in a magic trick, laugh, but it did! I notice my children disappoiment with my ilness as I am house bound and they depend on others to even go to the park, but I cannot loose hope...At least I want them to know that I have tried my best.Yes, they have me here for the kisses and cuddles!!!!! Best Wishes for you, thanks again for comment.

[ladymoth]

Hi Pearl,

Your children have the wonderful mother they deserve because you care - so many parents don't. So there - you can stop worrying about that one straight away! The physical bits are a terrible nuisance, I know, but the love is there, and that's what really matters.

I think you have raised some very important points here - pain clinics are used by people who are in pain, yet no one has looked at the need to provide comfortable seating or resting arrangements for them during the long talks. There is also an issue of child-care and transport.

Would you be able to write to one of the hospital administrators, and clearly point out the difficulties that you and others may face?

Use bullet points if you can, and keep it factual and unemotional. (the emotional bit you can do here. 'cos we understand!)

If you did this, you would do a valuable service not only to yourself, but many others who suffer as you do. A great deal of thought and funds are expended on keeping patients comfortable when admitted to hospital, but out patients get a raw deal.

Hopefully the 'powers that be' will value and appreciate the input from a service user. I guess it's not that they don't care, but they don't understand how it is to be in constant pain even when seated. To a fit person, an afternoon at a lecture would be a 'good skive' as we used to say when students!

If you felt up to it, you could even ask other patients how they felt, and add their comments to your letter - it would all help..

Thanks for an interesting comment on a service which has good intentions, but which obviously falls far short of its goals.

Moffy x

[pearl76 in reply to ladymoth]

Thanks a lot, I agree. Very Good Idea, I will definately write to The Amersham Hospital Team when feeling a bit better.I do think that Hospital space shouldn't be wasted with information day just to decide for futher treatment. I believe a well done DVD sent to the post to the referred patient would be more economical for either parts. I would rather listen to all information from my bed.I do think hospital visits should be only for treatment.The ways to get to the point where they can offer or not offer something shouldn't be the way it is. Give us false hopes... Thanks for your caring comment.Ariadne

[jjojay]

I feel exausted just going anywhere , my sensory perception which exhausts my brain to the point where I feel I'm going to be sick. Then physically I'm exhausted too. This happens when I go anywhere. I feel almost housebound. I go to work then come home n just have to get straight in bed with hot water bottles and hope I have enough energy to get up n cook a meal if I can. It's bloody awful . I really wish I could just not have to wrk my life I think would get easier if I keep on having suezures type episodes , if that's what they are. I will have to stop work. I couldn't cope tho with this money problem with ESA ASOS DLA problem rekon that may put me bk in hospital and al be no good for three weeks. Trying to look forward to a break in the weather I know this pain will ease. Bloody ek , I do moan . But it's the honest truth and think we're all entitled to whine a bit . Whenever I read something like this it just makes me relate .

I'm going to clinic soon so will endure the same in order to just get some help x

[pearl76 in reply to jjojay]

It is a long journey, but if you believe there is no way out, you have to do it. I was like you, wishing to stop work as life was too miserable, then now I am home, housebound wishing I could have some help and have normal life again, it is a struggle...I just believe we have to accept it, change our mind set and realise that is not our choice to be ill.I wish your experience with pain cinic to better than mine to start off, but I haven't finished with them yet, I still have hopes for some assistance.I guess this is our mission too, to live with the ilness and look for better answers for a better future us all.Wish you Good Luck all the way. Ariadne

[nutzieone]

I've attended a pain management clinic. not sure where you went? Mine was at Sutton Hospital. The one there was the "pioneer" of pain management and a lot of other hospitals use their format now. the chairs we had weren't the most comfy but there were pillows, and other aids to help make yourself as comfy as possible. There were two physio type couches as well which people in my class certainly made use of! I got up and moved whenever I felt the need, even if to just stand behind my chair and stretch or lean against it. one thing I would warn against is don't go into it thinking they will get rid of your pain 100%. If they do then that is awesome but 99% of the time it is learning how to DEAL with the pain. I am in more pain now than I was when I first started the course. I now have sciatica which is so painful, makes me wish I was more "thankful" for the other pain I had! I see a lot of people not giving pain management a chance and saying i don't need counselling, etc, etc. But I can say that having been through the course and also doing the Expert Patient's Programme it has helped me deal with my pain differently! it is there, it is a part of me and I just take it as it comes! Yes, I would much rather be pain free but I would also much rather try living my life than be doped up on so many painkillers! I have been on a huge amount for a long time and I am trying to come off of them. Some days I just say no and take what I can but other days, I realise I would rather be enjoying things than just sitting around saying "why me"?. I am certainly not minimising ANYONE's pain! I'm just saying my experience and how I'm dealing with it. Its not easy at all and I would never say that it is but taking it day by day and we'll see! Maybe some day I can be pain free!? I do wish you luck and hope you find help with your pain!

[pearl76 in reply to nutzieone]

wow! This pain clinic seems to be really aware of what is more suitable. I am happy to hear that. Thanks for comment. Yes I agree with you and understand what you are saying.I am just pointing out the way the information is handled to us not the information itself. I believe all colaborates to help us deal with our pains, not just the pain clinic information but any sort of information that can help us to reduce the pain& fatigue and stress cause by the ilness, but I have done all of this since first day I was in pain! When we are referred to Pain Clinic we naturally expect a bit more, specially being inside a hospital. I just guess the ilness itself has now being marginalised so much that people just discredit the urgency and importance of treating in a deeper level, but this is just my opinion, it is what I have been reading and listening since I was diagnosed.I would rather just go to a hospital if there is any practical treatment offered.I would leave the information reduced to a DVD or the leaflets itself.Probably people are fine with it but because I am in so much pain and discomfort it doesn't make any sense to me... I am just venting here , but yes I do understand what you are saying! Thanks a lot for comment, really appreciated. Hope we all managed to get off these nasty pills, it is also my aim to try and come off them. Yes , a day PAIN FREE would be just a dream, a very good dream!!!! Probably when the days are warmer we have some sort of relief! Gentle Hugs. Ariadne