I have agreed to have this procedure done, it is only experimental at this stage but I have said I will take part in the trial.
I told him I will try anything to help this pain. It is being given over 3 infusions at day hospital 2 weeks apart.
Anyone else been offered this treatment? Did it help?
HAPPY NEW YEAR TO EVERYONE!
Yes, I had several sessions of this treatment about 6 years ago at the National in Queen Square, London. Unfortunately for me, it had no positive effect whatsoever.
don't want to put you off. Iff you feel unwell while having it done, tell them...........take care
i had two infusions the first worked really well the second not at all, but I had no problem whilst it was being done good luck with it, I agree its worth a try
vivien
I had one, but it wasn't effective for me, but everyone is different, so good luck.
Hi I am thinking of trying this myself. Ive been in pain for over 7 years but because Im only 22 the doctors don't seem keen to be administering me with drugs and anaesthetics. Could you let me know how you get on?
Hi Zebralegs. Will do. Got my first appointment Thursday 9th.
Hi. Just a quick update.
I have had 2 infusions so far and one more to go on Thursday. Pain clinic has also given me Duloxitine 60mg to start moving up to 100mg if I can tolerate it.
So far I unfortunately don't feel any different. I still hurt all over and my joints over the last week or so have been very stiff and extremely painful [don't know if its because of the infusions or just flaring up]. I am also extremely fatigued, can sleep 12hrs and still feel tired. I have also had to stop my meds for night time hallusinations [can't take duloxitine and sertaline together] so my hallusinations are off the scale - seeing everything from spiders, rats, snakes to people standing, hovering all around me ect.
Caz. x
Hi All
Well I have had my 3rd and last infusion and unfortunately it did not work. I Have stopped taking Duloxitine [not sorry because it means I can go back to Sertaline for my night hallusinations] and been given yet another drug called Gabapentin and will be going back to see pain specialist in 2 months time. I am feeling sorry for myself at the mo. thought it was going to be a miracle cure and I would be my old self again.
I also go back to Rheumy next week to see about being put back on something for my joints. At the moment I am as stiff and painful as can be my feet and hands are terrible can hardly walk and cannot make a fist at all plus my back, neck and shoulders are agony.
Also my jaw is misaligned and agony and I can only eat soft foods and I have a severly dry mouth [tongue is stuck to palate in morning] plus my eyes have dried out and I now have a Corneal Abrasion [eye is blurry and seeing double] and now my other eye is going the same way and waiting to see eye clinic.
No wonder I feel down!!!
Caz.
Caz i also was put on Gabapenten for AO fantom tooth pain its like having toothache daily..nighmare. Didnt work for me. Have been on a few other ones too but nothing has helped it. I'm enquiring again about another try of Radiofrequency but thats a waiting game so is the waiting list for my prolapsed discs injections. Thats NHS though.
Hi Ladycaz, have you been tested for sjorgens syndrome? The dry eyes/mouth sounds a lot like the symptoms of that. I just wondered what they thought was the cause?
X
Hi Lipbalmaddict, have never heard of sjorgens syndrome. Have had a look on internet and it does sound like my symptoms. Will ask Rheumy about it on Monday.
Thank you so much for the info.
lidocaine infusion?
10 day inpatient lidocaine infusion
