Forum Replies Created

Viewing 15 posts - 1 through 15 (of 86 total)
  • Author
  • in reply to: Expert Patients Programme #37527

    I’ve been trying desperately to get on an EPP for 4 years.

    The one run online I have tried to access many times but it isn’t comissioned in our area and when I wrote to the CCG they said they wouldn’t fund it as there was not enough documented evidence that it is beneficial to patients.

    in reply to: The future of Pain Relief #37343

    Hi Di,

    Regards the NHS I do think you are right. I worry just how far back they are going to cut and can envisage an NHS which is free at the point of use for only a certain range of issues. The rest will have to be paid for by the patient/health insurance and unfortunately for a lot of us I think that will include limits on treatment of long term issues such as chronic pain and maybe even Cancer.

    I can envisage an insurance based healthcare system but surely the Government will have to legislate on what insurance companies can and cannot refuse t cover in terms of treatment.

    As it stands pre-existing conditions are often not covered under health insurance policies, or are limited/have an exclusion period. Surely the Gov will have to legislate to prevent this, but then insurance companies wil not want to be paying out immediately from the start of cover so the premiums will be very high and in many cases unaffordable.

    What annoys me is that there are other drugs that are being used in western developed countries which the NHS/Gov refuse to consider. Many are more effective than Opiates when you look at the trials etc.

    Flupirtine is one drug which is available in many European countries and the US but the NHS won’t even entertain it, so anyone in the UK who requires it has to pay for a private prescription and order it from outside of the UK.

    Many of us on here have a significant interest in this Mays election. It could make a massive difference on our lives in terms of healthcare depending on who is in power once the ballot boxes close.

    in reply to: Palexia – No extra relief #37306

    Thanks Tony,

    I suppose it doesn’t help in the fact that the pain I have is so much worse than I had thought it was.

    Before the Pain specialist changed my meds he asked me if I thought Morphine was still affective in reducing my pain, and having been on it for so long, and considering how much pain I was still in whilst taking it, I cpuldn’t tell him if it was beneficial or not. I suppose you just learn to live with the level of pain you have.

    It was only whilst titrating off Morphine that I realised just how much pain I was in and those 3 weeks of which the last included the Christmas week (although this did mean that I could have a few sherberts for a change).

    I suppose only time will tell.


    in reply to: Dry Mouth with palexia #37243

    Hi, thanks for the replies.

    I spoke to the Doctor who said he couldn’t do anything about dry mouth and suggested chewing gum etc.

    During the day I can control it. I’m drinking about 2lt of water a day and chewing gum. It’s at night which is the problem and it affects my wife as I snore bad when I have dry mouth.

    Anyhoo, I have a further question with regards to Palexia.

    I’ve been on it now nearly 2 weeks. I started on 100mg twice daily and increased to 150mg twice daily after 7 days. I’m due to increase again to 200mg then 250mg twice daily each time at 7 day intervals.

    For those who have taken it before how long was it before you started to notice a difference?

    I was on 160mg per day of MST (80mg twice daily) and I was still in severe pain but nothing compared to how I am now.

    I’ve been told that 250mg twice daily is the max dose. Did anyone go above that as I know from experience that some pain specialists will push some meds above recommended maximum doses?

    I’m not asking for medical advice just for your experiences.

    Many thanks

    in reply to: Dry Mouth with palexia #37186

    Thanks for the replies.

    Off to Boots later to see what I can find.


    in reply to: ActiPatch trial #16385

    Just to give an update. After the swelling I wanted to make sure it was the acti-patch causing it so I stopped using it for 2 days whilst the swelling went down. I’ve started monitoring the situation daily and it is definately making my knee swell. Question is is this because of the device itself or the pocket that it comes in which straps around the knee.

    I’m goin to give it a try just sticking it to my knee with the sticky pads and if it still makes my knee swell I think I might have to give it up.

    So far I’ve had no relief from it.

    in reply to: ActiPatch trial #16384

    I’m a bit worried tonight.

    I’ve been using the actipatch all day for the past 3 days (not at night) I use it on my knee with the knee strap.

    I’ve not had any benefit from it yet but I expect that it may take time for the effect to build up, i.e. the more you use it the better the effect.

    However, I came home from work today at 8pm. I’ve had the ActiPatch on since about 8am just before I set off for work.

    I changed out of my work clothes and noticed that my knee has swollen significantly. At this point tool the device/strap off my knee.
    I’m not in any more pain with it, but still nearly 5 hours later the knee is still very swollen.

    I’m going to contact Ian tomorrow and see what he says.

    Has anyone else had this reaction?

    in reply to: Actipatch for Fibromyalgia anyone? #17726

    ‘Thought this was a support group.’

    I’m sorry but I find that comment rather offensive.

    The help that is provided on here has been invaluable for many many people. The fact is the ActiPatch seems to be a relatively new product for many people on here so people may not have any experience of it yet, hence why quite a few of us are trialling it.

    I’m sure that someone who has experience of the ActiPatch will offer some advice when they see your post, but we don’t all sit on this forum for every minute of every day, most of us have other things to do.

    in reply to: ActiPatch trial #16374

    Hi everyone,

    I received my actipatch yesterday. Wasn’t expecting them this soon, especially coming from the States.

    I’m going to start using it today once I have a diary set up to monitor it.

    in reply to: ActiPatch trial #16363

    I emailed them last night and got a response today.

    They’re sending me a pain assessment form (web based) in the next few days and will send out the actipatch after that.

    Looked at them on Boots website, apparently they last about 700hrs (can be truned on/off) and are £20ish.

    Lets hope they show some benefit, I have enough Boots points to keep me going for quite a while. LOL.

    in reply to: Pain clinic appointment today #25684

    Went for the appointment, it’s not good.

    They looked through my history, looked at what I’ve been prescribed, what treatments I’ve had, and basically said there is nothing else they can provide for me.

    They have arranged an appointment with one of the other pain Dr’s in the clinic and suggested I discuss Butrans with them as I was only on it a few days before being taken off due to severe sickness/dizzyness/stomach cramps.

    They also said to ask again about Sativex but to not hold my breath as it’s very, very unliklely.

    Looks like I’m looking for yet another pain clinic.

    in reply to: Having to give up work #25005

    I’m going through the same issue now.

    On the one hand I know I need more time to rest and manage my condition.

    On the other I don’t want to stop work. Not only because of the financial situation, but also I enjoy working. I’d possibly go mad being at home every day.

    in reply to: Reached another cross-roads #23728

    I’ve now got the appointment dates for the laser threatment. It starts on 4th April and is weekly for 6 weeks (excluding the easter Friday week), then fortnightly for another 4 weeks.

    Still not sure what to expect. I’ve read a bit about it in the net but still none the wiser.

    Has anyone had this done and if so what were your experiences?

    in reply to: Reached another cross-roads #23727

    It’s funny Jean should mention Laser therapy.

    The pain clinic contacted me on Friday to ask if I would like to try the laser therapy.

    Never had it done and it’s supposed to be risk free and is non-invasive so I stand to lose nothing but potentially gain everything.

    Can anyone advise what the procedure is?

    in reply to: Reached another cross-roads #23724

    Following on from my post regarding funding request appeals, the secretary for my pain Dr has suggested I compile a list of alternative treatments/medications to discuss with the Dr.

    So far over the past 7 yearsI have been prescribed:
    Gabapentin, Pregabalin, Amitriptyline, Nortriptyline, Dihydrocodeine, MST, Oramorph, Mirtazapine, Citalopram, Ketamine, Buprenorphine (only for a couple of days as it made me ill, started on 15mcg/hr), Meloxicam, Naproxen, Lidocaine.

    I have had the following traetments:

    Physio, counselling, very basis acupuncture, reflexology(non NHS), massage (non NHS). I’m sure theres others but I can’t think at the moment.

    I also use a TENS machine daily for about 6-8 hours over the day.

    Without posting recommendations, doses, etc so we don’t fall foul of forum rules, can anyone suggest anything I have missed that I could put to the Dr and discuss with him? No matter if it’s available on the NHS or not, I’m after anything I can discuss with the pain dr that might help.

Viewing 15 posts - 1 through 15 (of 86 total)