Hi, haven't posted for a while as struggling with the technology, so can't always do what I'd like to (can't blame that one on fibro fog!) I do read the daily news feeds which are a great help , make me smile and also realise others are worse off than me , and yet are so carrying and helpful Many thanks to all x. Just seen Rheumatologist, told me fibro is a nasty chronic disease , also said have chronic irritable bowel, chronic ischemic heart disease? Had all heart tablets withdrawn 5 years ago ! Chronic hyper mobility chronic cognitive something and several other chronicd I've forgotton! No explanations, can't see GP till 9th May Discharged and left in Limbo Told me exercises physio gave me were totally wrong for fibro Then said if you get worse get GP to refer you to chronic pain clinic, didn't have heart to tell him physio(boot camp leader) I had seen was the chronic pain physio.Like lots of others seem put it all down to fibro! Maybe it is ? Also got dry eye and mouth, said might be Sjogrens? What else would anyone want to have wrong? We fibro's are very greedy, , !! If I didn't feel so I'll it would be funny, could write a book if had energy! Anyway my thoughts are a lot of people worse off in the world than me ! I have three darling ( if not a pain in the bum) children and five amazing grandchildren , the eldest studies Russian and French at Cambridge Uni and the youngest two aged three and one are my darling prince and princess who keep me almost sane, the middle two are debate able at the moment! (Teenagers) Sorry this goes on, maybe start of a book! To get back to my request, does anyone know anything about Fentynal patches, Rheumy prescribed them , can't tolerate gabapentin, pregabalin tramadol etc Told him can't take Amytriptyline as fall asleep all day but still given them Any advice Apologies going on and Thankyou xxc any admin there please to lock my post! I'm useless xxxx
Fentynal patches: Hi, haven't posted... - Fibromyalgia Acti...
Fentynal patches
Fentanyl is a strong opioid. Did he prescribe the 12mcg patch ?
I am a little surprised he prescribed them...
Hi Thanks for your reply, not at home at moment so can't remember dose I was unsure of them, do you know anything else about them please? X
They are like most opioids so with time they usually become less effective and also withdrawing is difficult.
Fentanyl is 100 x stronger than morphine hence the dose will be in micrograms rather than milligrams.
The patch sustains a regular amount of medication to keep the pain at bay.
Strong opioids generally aren't used for fibromyalgia.
Personally I would ask to be referred to the pain clinic and see if they can help, but also their view on the patches.
Seeing as your new to them; it has to be a low dose so try not to worry too much. When I took them I felt sick for a few days.
Opioids can also cause constipation so best to stay on top of things.
Hi, thanks for the information, just arrived home , checked letter and he's recommended 25mcgs and 20 Mgs Amytriptiline. I will certainly investigate further before considering taking them , had bad withdrawal symptoms from Gabapentin etc . I would like to try and control it (if that's possible) without taking drugs to have more side effects on top of everything I have now. Unfortunately the pain clinic in my area is short staffed and I've just been under them, only allowed two appointments in this area , they've been operating with locum physiotherapists and the physio from the local hospital has taken it on, she had to cut my appointments short as had to get to clinics at another hospital , and it was her whom the Rheumatologist said had given me the wrong exercises for Fibromyalgia etc, so the Chronic pain clinic isn't really an option I see my GP in May so I guess I'll have to wait until then Many thanks Sandra x
I was on fentynal patches for about 18 months then went over to mst morphine tablets which I'm still on, the reason I changed was I've got very sensitive skin and would I itch like crazy also you can't sit in the sun or use heated blankets as heat speeds the patch up and you end up having to much, I know people on them and they swear by them xx
Hi, thanks do much for your reply. I know what suits one doesn't suit another, but it's helpful to know someone else's experience of them. Many thanks x
Hi Sancut
I am so genuinely sorry to read of your suffering and struggling my friend and I genuinely hope that your Fentynal patches work well for you. I have never used anything like this myself. Please take care of yourself.
All my hopes and dreams for you
Ken
Hi
Thankyou so much for your reply. When I was on Gabapentin I had lots of side effects and couldn't function, it affected my sight , balance and I was disorientated and sleepy all day, GP kept increasing dose, had more side effects , then really bad coming off them. I'm worried as an opposite these will be worse. And don't want to be addicted. Not sure which way to go with these. Thankyou for your good wishes x
Hi Sancut - I agree with the others. Fentanyl is one of the stronger pain medications and can be highly addictive. My mother in law was on them for a while and got so addicted that I couldn't bring her home from rehab. I had to put her temporarily into Assisted Living until we could work her down from them.
If you need the pain control (and it really sounds like you do), then take them as needed, but I agree that a discussion with the pain doc might be in order to see if you could use a lighter dose, etc. Good luck with all of that - it is really a hard place to be.
Gentle hugs
Hi, Thankyou so much for taking the time to reply to me , it's really helpful. I'm apprehensive with most medication, having had bad side effects, and although I know no two people respond the same, with a drug like that it is really helpful to here other peoples experiences . The problem over here is that none of the health care people seem to work together, you are just passed from one to another with them not communicating with one another , or the patient , and like now when I need to talk to my G P it's four to five weeks I will have waited for an appointment . That's pretty average at the local surgery . I don't know what it's like with you, I have relatives in Australia and theirs is amazing! Thank you so once again, and I will be discussing alternatives , I don't want to take the risk with Fentynal, getting off high dose of Gabapentin was bad enough, I think with all my problems I don't need another! Best wishes , Sandra x
Hi Sandra - I guess for me, it depends on what I need. If I am really having a problem I can usually get in to see my doc in just a few days, but I have been going to the same doctor for around 25 years. She knows me, and knows that I will not ask for anything in an urgent fashion unless it really is.
I wish you luck with the pain control doc. Pain is a funny thing. I actually have a very high pain tolerance and so I can get by on a lot less than most people. Others have a low tolerance and a paper cut can send them to the doc. The trick is to know of course what yours is, and try to get something that will allow you to function and move (it makes it worse if you sit totally still), but without getting addicted too badly and needing more and more. Good luck with that and let us know how you do..
Hi, I just read some of your earlier posts, you have a lot to cope with, I wish you all the best with your health problems. I too have quite a high pain threshold, although as you will be well aware some days it is severely tested. I would rather try with lower level drugs to keep it tolerable than be doped up on addictive drugs. I do tend to be on the go a lot, a 300 year old house doesn't help! and I do look after grandchildren 2or3days a week which involves a 80mile drive Pain is pain and it's horrendous, but I find I feel disorientated and almost in a bubble a lot of the time, hard to explain just an ill feeling this is with no medication at all, as weaned off it several months ago so when I saw Rheumatologist it was the real me. Just wondered if you experience anything like that? How was your Sjogrens diagnosed, I have had dry eyes, got drops for this , and mouth, optician and Rhumatologist said could be Sjogrens , but that was all Thanks for listening and I do hope you get the fibro side of things diagnosed properly I wish you well Soft and sincere hugs xx
Hi Sandra - Wow - I don't know whether to be jealous or glad it's not me, but wow - a 300 year old house. We watch a show here in the US called Stone house Revival, and it deals with houses that are 17 and 1800s - they are wonderful, but there is a lot to deal with there that is different from our little 1985 place - ha ha.
I do have a lot going on, but honestly, most of the people on this board do too. I honestly think that things show up one at a time as we get one under control. The RA and the Sjogrens were diagnosed by my GP (who actually has diagnosed everything in my medical history, including the Fibromyalgia). She ran a Sjogrens test after asking me if my eyes are ever dry, and I said yes. At the time I was so horrified about the RA that I didn't really pay much attention to the Sjogrens. Then when I realized the Sjogrens was better the Fibromyalgia showed up.
One of my best friends does the same - look after her grandkids 2 - 3 days a week, but she is only 51 and her grandkids are only about 10 miles away. Still there are days when they kick her carapace... You have my sympathy with that drive.
Yeah - I know what you mean about the meds. Yes, there are times I feel like that - a general malaise, or like I have a mild case of the flu. Usually I figure that means I ate something I shouldn't have, like wheat something, or white potatoes, etc. Take care of yourself and good luck with getting the pain under control. It is a cruel taskmaster for sure. Have a wonderful weekend.
So I had a VERY bad experience on Fentanyl patches. I know everyone is different and can tolerate different things, but I cannot tell everyone enough - this is a strong opiod drug and your body can become quickly addicted (like mine did). Anyway, I wanted to share my blog post on where I share my experience in the patches - hope it's helpful, but my god please be careful if you do start them, please! wp.me/p5VgTs-fc
Newly diagnosed, help with meds please x
Oh my goodness 
Still having pain
Hard to be a FibroGoddess in the ER!
why do i feel so guilty for having fibro?
