Morning people, I have Fibromyalgia, chronic fatigue and damage to my lower spine, I went to the Pain Management Clinic yesterday for a follow up appointment, I originally saw the consultant last July, he put me in for a Lignocaine Infusion (that is a very strong concoction given through a syringe driver over an hour), I had this on the 1 November 2016. This made the pain particularly in my hands and arms unbearable, and also caused severe fatigue (I could do approximately 20 mins a day of 'normal' activity, before being completely wiped out for the rest of the day and on some occasions the following day as well), they did a follow up by telephone on 27 December 2016, and I was sent a new appointment to go back to see the consultant for yesterday. I was told that pain medication is 'no good for the type of pain I have', I now have to wait for an appointment to go a group session with physio's, pain Physcologist, etc., this appointment will be for sessions from 10 am - 3.30 pm once a week for 8 weeks. Now, if I can only do 20 minutes of normal activity a day, just how do you suppose I am supposed to drive to the hospital (almost an hour away) then under go a 5 and a 1/2 hour day and then drive home?. I have also been taken off all medication completely. It could be months before I get an appointment for this farce, and in the meantime I have no pain relief at all. any suggestions?
Pain Management Clinic: Morning people... - Fibromyalgia Acti...
Pain Management Clinic
Good grief, that is harsh, how on earth can they just stop all your medications.......I attended a group session earlier this year and found it really helpful. On the back of this I am learning to pace and look after myself without guilt, but through that journey my medcations continued and I finally resolved to give Pregabalin a go.....had put this off for six years.....silly me, I am presently finding it helpful with some of my fibro pains. I wish you well, I hope the course is beneficial for you and I hope the docs review your meds. Wishing you a peaceful day ☆
Suggest looking elsewhere for pain management as my own experience was waiting over a year for such a course intended for instruction in methods of living with pain when pharmaceutical interventions cannot be tolerated.
Have you tried acupuncture? I have someone who is a acupuncturist/Chinese medicine expert visit me at home about once a month I use part of my PIP for this. He is more knowledgeable on fibro than any doctor or pain Specialist I've seen he has also given me good advice on diet etc. Just a thought.x
Hi, yes, I had acupuncture on its own with no effect, then they tried it with electrodes attached to the needles, this worked but only lasted for about 8 hours.
Yes that is what I used to have the electronic acupuncture. When they first started they were giving me the treatment every 3 weeks and it seemed as though it had a cumulative benefit. Then of course they leave bigger gaps in between and it was less effective. The lovely male nurse said you can actually buy the machines and he thought for people in extreme pain it was a pity the NHS didn't provide one for home use as he said it is quite easy to show a carer how to use one and in the end would be more cost effective for the NHS. Of course they only seem to look at the shorterm.x
I wish I could, unfortunately, I am single and cant work, my only income are benefits and I don't think I get PIP
Good morning catherine19611 welcome to our wonderful forum ☺ I'm sure you will come to find the forum invaluable in chatting to others who are going through the same experience as you, talking to others at different stages of their lives with Fibro and learning from their experiences.
It does help with the whole process and I wish I had found the site years ago. I have had Fibro for nearly 30 yrs and I'm still learning about it, like we all are.
I know exactly what you mean about getting to and from these places & probably sitting around for a couple of hrs is virtually impossible for some people, I couldn't do it so i know how you feel. They can refer you to lots of other holistic therapies though which proves very useful, acupuncture. CBT (Talking therapy) to help you manage pain & life changes due to your health, also hydrotherapy. I'm so sorry that you have been left in this predicament and obviously in pain, it's dreadful. What about getting your doctor to arrange transport for you ? Maybe this would be possible and help with the process.
Please do go look at the mother site where you will find all the information you need and lots of useful links on Fibro and I look forward to chatting to you on the forum.
Peace, luv n light
Jan xx
Sorry you that your life is so difficult.
Re pain management course
The one I went on was similar and some people were pointed to a B and B nearby and went home at week ends. Tell them your problems with fatigue may be they will come up with a different approach. Maybe they Skype. The chronic fatigue clinic offer that as they realise the difficulties.
And to my shock I was also told that pain control medication did little to help with chronic pain. And after much research it finally sunk in. The clinic also lent me a tens machine and I eventually brought one. Not idea, but a distraction on occasion.
Go well
Hi catherine19611
I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I am so truly sorry to read of your situation and if your pain becomes unbearable I would go along to your local walk-in centre and present there with uncontrollable pain and see it they give you any pain relief?
I also use a TENS Machine and find it helps me personally. It may be worth a try?
I want to sincerely wish you all the best of luck and please take care of yourself my friend.
All my hopes and dreams for you
Ken
Thank you Ken, I have a Tens machine, unfortunately it is useless, I have also tried accupunture that alone is also useless, I had it with electrodes attached to the needles and that only lasted for about 8 hours. My GP told me that 'Paraceatamol' is a very good drug, I wont tell you what I thought of that response.
I have never heard of a walk-in-centre, will look into that.
I am so sorry that your TENS did not help you my friend. If a GP said something like that to me about Paracetamol I would have really let rip! lol! Good luck my friend.
I just couldn't believe what I was hearing
Paracetamol is a great drug but only iv tablets will probably give you stomach problems then of course there is constipation!
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