For quite some time my pain levels were becoming increasingly intolerable. I developed an allergy to my Butrans patches, and taking more and more Oramorph + Codeine, with zero benefit. Desperation set in, along with severe mood swings, fatigue, rubbish quality of life.
My gp then decided to try Fentanyl patches instead. EUREKA! I feel like a new woman. At the end of the day, I have a sense of achievement, getting things done & doing them myself. I go to bed at night feeling at peace, content. Sleeping so much better, so that I wake up in the morning feeling rested, I can get up, get myself into the shower, and make plans for the day.
For fit people, might not appear to be much of a quality of life still. But I can contribute, I dont feel the need to avoid family/friends, 'cause when they ask how i'm feeling I can answer honestly "I'm good!" We can chat, have a joke, discuss their problems, offer an opinion or advice if appropriate, and I make sense when I talk, or as far as I know!
Good enough for me. Wish everyone a good bank holiday. And some sunshine PLEASE! Oh ok, maybe pushing it a bit.
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tulips123
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Hi tulip so pleased that at last you seem to be getting some relief, I've never heard of the patches and my doctor hasn't mentioned them either, I'm on gabapentin, tramadol, serttraline and co codamol if I need that extra push, I'm on medication for other things but that lot is for the fibromyalgia and osteoarthritis and spondylosis of the spine, not that any of thm are taking the pain away completely but helping me cope I guess, but I am truly pleased for you, gentle hugs to you ...Dee xx
Thank you Dee. It's a long haul, Having such a good (if not the best) GP makes so much difference. Some of the posts I read on here make me want to weep! I'm sure you can relate, sometimes get fed up with all the meds. etc., but probably wouldn't be here without them. Onwards and upwards! G'night, sleep well. xx
Morning Tulip I was so pleased to see that you have managed to find the right combination of meds to suit you. Hope you slept well and that you wake refreshed and ready for the weekend xgins
That's an affirmative lol! All looks good apart from my side order of warm sunshine!
You have a good weekend too.
Excellent.... as I have the right meds for night and get sleep I constantly say go to your GP and persist until you find the right med combo.... So pleased you have ... Somehow everything looks so much better after a nights sleep
Morning tulip I am on brutrans patches and they make my skin red and sore I've said to my gp he gave me cream to put on first then the patch but still get it . I am going to pain clinic in June so will ask about the patch you are now on . Thank you for sharing this and so glad it's working for you and you feel better gentle hugs
That's really interesting. Community Matron suggested trying them on legs, pharmacist and leaflets all said use them chest, upper arms etc. (at this point my gp was on leave).
Trial and error. As long as something does the job heh? xx
That's very interesting. I thought they had to be "above your heart". I have been getting really bad itching under the patch so I was thinking of seeing my doctor. However, I think I'll try them on my thigh too now, lol. Whatever works I guess xx
I also wear on upper body and doc gives me cream for soreness. At Fibro meeting I met someone who uses them on legs so that's where next one goes!
I Cannot take opiods so the fentanyl is out for me. Been great today sunshine all round wonderful pain dispeller for me. Forecast rain coming though. sufficient the day etc,
Just googled fentanyl—a potent opioid analgesic used in the management of chronic intractable pain.
Well that's me out...can't tolorate opiod's or analgesic's...but I do hope it brings you pain relief and let's you lead a normal life.....well done for persisting with your GP.....
I dont think a normal life as such, but good enough to make it worthwhile for me.
Gutted for you, being allergic. I cant use aspirin or ibuprofen type pain relief due to allergy. Necessary long term use of steroids have mucked up the adrenals as well, so i'm just grateful for what I can get that works. My gp is the best!
Hi tulip, I'm so pleased that you have found something that works for you. A good sleep impacts so much on our ability to cope with our condition and good pain relief is essential. Long may your improvement continue, and an improvement in your quality of life.
Happy bank holiday, methinks the sun may have got his hat on and gone on holiday, enjoy anyway !
How wonderful you have your pain under control and able to cope with the simple things in life . I'm going to request these from my gp although I dont hold out much hope of bei g prescribed them do I have a right to insist on trying these patches was on butrans but side effects were bad. Thank you for posting it gives us some much needed hope.bless you sweetie xx
Hi its brilliant that yo have found such relief. Well done. I have read about these patches and understand there is various does, Which does are you on.
Because they are an opiod there are addictive. But does it matter if we get relief.
They are addictive. Horse has already bolted, shutting the stable door is a bit pointless :). I am lucky in that my gp cares enough to try anything to make life easier, regardless of the cost. She has started me on 25mg, slow release for 72 hours.
In reply to your 2nd message, totally understand, not a problem! Take care
Just for fm, i take the ubiquitous amitriptyline (it seems everyone starts on this one, been around for years), codeine with paracetamol, oramorph and zopiclone 7.5mg for sleep. A helpful gp can make so much difference. Mine will prescribe what she thinks will help the most. Sadly, I've learnt from this website, not everyone is that lucky. It boils down to ££££££££££.. xx
Thank you. You are absolutely right some doctors have stopped thinking about the patient and are thinking about the money. Its a sad old world. You certainly take a lot of pain killers but if they work for you that great. Keep up the good work. Glad you are enjoying life a bit more. Take care lovely to speak to you.
I was on fentanyl patches for a few years and having pain relief direct into your system really helped, having tried the but tabs patches which looked like huge plasters stayed on for 7 days & tore my skin I was reluctant at 1st to try fentanyl patches they couldn't be more different, from 5" plasters to clear about inch and a half by an inch patches changed every 3 days, easy to put on myself and most of all of course pain relief. Sadly though as my body cannot regulate heat well the sweats & heated body parts I get at top of my body meant either the patchs were falling off within hours or a couple of times I was so ill on them
And my dr thought I had got all 3 days dose within hours and was in hospital and very scared so had to come off them, now on MST & Oramorph which taken correctly can take edge off but Gabbapentin more effective at keeping my muscle spasms under control.
I was reading an article yesterday assaying in Ohio they had developed a definitive spot blood test, that showed changes in body for fibro sufferers, and differences to those with OA or RA. So maybe they will start working on medications specific to us soon, well I can always hope lol
Medical science is constantly moving forward. It gives hope, which at times we really need!
I have problems with the 'thermal regulation' too, so thank you for that info. I'll keep an eye on it. In the meatime I'm going to just enjoy myself. xx
Ive been on fentanyl for two years- def have allowed me to live a somewhat normal life. Unfortunately like most painkillers i developed tolerance and an now on 100mcg patches with tramadol for breakthru pain. I use them on my arms and cover them with tape as i also have problems with body temp. Plus v imp not to submerge them in hot water when having a bath etc as they can accelerate the effect. The other side effect is they have destroyed my skin- on holiday recently i burnt horribly where all the patches had been so v imp in sun to put factor 50 on! V powerful drug given to end stage cancer patients but they have generally along with other non medicinal stuff really improved quality of my life. Good luck with them.
I do sometimes worry about developing tolerance to new meds that work really well.
Just for now though, I'm content to get what I can out of today. Thank you for the warning about effects on the skin. I'm fair skinned and there is a history of skin cancer in my family, so I tend not to sit out in the sun. Only thing wrong with that is the free vitamin D, which we all need! Why does everything have to be so complicated!?
When I went on holiday in the sun I put my patches on my stomach/ side & always coveted with a swimsuit, I know it does say something about not exposing patches to direct sunlight in the drug info in the box,
Tulip when we have so much against us as you say enjoy the good effects your having, I certainly miss my patches,
We actually have a little sun here in England today so been out enjoying it a little
I'm down on the south coast. Lovely sunshine, but still feels a bit chilly to me. I'm still stuck at home. Somebody has jammed my side gate shut (probably kids), the only access for my scooter! You just could not make it up could you? Neighbour said she would ask her son to have a look when he got home (dont know when), and in the meantime she solved a potential crisis by giving me some milk for my tea! That's me sorted. Good neighbours are SO precious.
Enjoy the rest of the Bank Holiday!
I agree with the good neighbours comment, I live in a flat & if they don't see or hear me for a couple of days or my post is still on the shelf they always check on me & always say if you want or need anything just ask.
Even though everyone is sayi g how hot it had been I've felt cold too & now my hands & legs are freezing lol
People don't realise how small things like the gate can effect us, I hope he was able to get it Un jammed & you are able to go out when you need to & are well enough
Thank you, I feel better than I have done for quite some time. I haven't been out there so I dont know if it's free or not. They wont disturb me if they can help, I often nod off in front of the tv! I feel a bit embarrassed really. When I realised I couldn't get out I started to cry and my lovely neighbour was just over the fence! It is strange, how something so petty can just set me off!! Another day tomorrow to look forward to.
Sounds like you have good neighbours too. Can we put in an order for WARM sunshine for the rest of the Bank Holiday? Enjoy.
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Don't be embarrassed I find I can cope with bigger things and its the little things that bring me to tears too, being stubborn helps but sometimes I can be fine one minute & in tears over nothing the next.
Another sunny day althoughim in doors & its freezing in here in bed with 2 quilts & a blanket lol
You are so right, I hadn't thought of it before. Just mentioned it to my daughter and she said she worries more when I go quiet with a bigger problem than shedding tears over something so pathetic. The gate has been freed, but only at the expense of the frame. No choice 'cause it's the only way I can get out! Hate feeling trapped.
Lovely down here. I'm just off for a snooze. Are you feeling unwell, or just tired?
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