I've just joined and looking for help... - Fibromyalgia Acti...

Fibromyalgia Action UK

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I've just joined and looking for help and advice

Dawnfybro82
Dawnfybro82

I've been let down so much by my Dr, years ago I got told I had endometriosis after taking strong pain killers for pain, ended up being put on fentanyl patches. Dihydracodiene for breakthrough pain and pregabalin but now my Dr wants to reduce my meds even tho ive reduced them by half to show im being sensible and not drug seeking or an addict. He told me I didn't have fibro but then a couple years later went to a different gp who said i definitely have fybromyalgia. Since reducing my meds my pain in my muscles mostly my back hips and legs have gotten so bad I cant even have a shower longer than 2 mins cos of pain, I cant walk even 100 yards cos the pains so bad I feel like I'm gonna collapse, I cant even do house work. So I've put 3 stone on which has made the pain worse, tried going to see various Drs who all refuse to give me anymore pain killers and only offer me chilli cream which does nothing. I only get 21 dihydracodiene a week that's 3 a day so I've been buying meds from friends, I get sevredol which don't do much and I've tried 250mg tapentadol which were brilliant, one tablet made me able to function the entire day with minimal pain, when I tried to tell my Dr he went nuts and gave me a lecture about it being illegal to take someone elses meds but at the end of the day I don't care cos i cant keep suffering like this, I've had a couple of serious suicide attempt in the past year and they didn't even refer me to see a psychiatrist, that's another area im struggling with cos psychiatrist won't see me they keep saying send her to pain management but pain management keep saying send her to psychiatry so in the process im not getting to see anyone. I've written my gp a letter basically saying I've had enough, put me back up on all my meds or change them or im gonna end up trying to kill myself again cos i cant cope being in this much pain all the time. I'm only 35 and I have to use a stick and I struggle to even wipe my own arse, it's so embarrassing and demoralizing im totally lost and at my wits end.anyway, sorry for droning on but I have no one I can talk to. Any advice is welcome xx

17 Replies
M0AL61
M0AL61Moderator

Hello Dawnfybro, and a very warm welcome to the forum. I have noticed that you haven't locked your post - which means that it can be read by anyone on the internet. If you lock your post it can only be read by members of this forum, and will generate more replies. To see how to lock your post have a look here - support.healthunlocked.com/...

I'm sorry that you are struggling so much at the minute with pain. I think you need to speak to your GP again and tell them that you simply can't cope with the medication that you're currently on. If you feel you're getting nowhere you can then ask to speak to your Practice Manager and tell them how much you're struggling and that your GP is unwilling to help. Your GP has a duty of care to look after you.

If your mental health is worrying you also let your GP know about that too. You can self refer yourself to your Mental Health Team by giving them a ring and asking to speak to the Duty Manager.

If things are becoming to much and you need someone to talk to you can contact The Samaritans at any time of the day or night.

I am sure others here will also have some good, useful information too. You are among people who understand here, and who care. x

Dawnfybro82
Dawnfybro82 in reply to M0AL61

OK thank u I didn't realise but I will make sure all my posts going forward are now available to everyone out with this site. My gp owns the practice so I don't feel like I can go to anyone else plus all other Drs won't deal with me cos my own gp deals with all my pain etc and they don't feel comfortable stepping on his toes. He's tried getting me mental health help and they just keep rejecting me. Even when I was on a ventilator after a huge overdose they didn't offer me any mental health support and when I told them I would just try kill myself again as soon as I got out of hospital they didn't do anything and were happy to discharge me from hospital. It's so frustrating x

M0AL61
M0AL61Moderator in reply to Dawnfybro82

That's awful Dawn. As you say, it's so frustrating when you can't get the help you need. x

Dizzytwo
DizzytwoModerator

Hello Dawnfybro82 it's nice to meet you. Sorry its under such sad circumstances.

Have you spoke to the samaritans? If you feel you can't talk over the phone you can always email them.

healthunlocked.com/api/redi...

I think we all need to reach out at times and I think the samaritans do a fantastic job in helping folks that may need a listening ear.

This link will show you how to lock your post if you would like to do that.

healthunlocked.com/fibromya...

If you need further help with this I'm sure any of the admin team would be happy to help.

You may like to take a look at the main website it is full of information you may find helpful.

fmauk.org

Please know you are among friends who understand and do not judge xx

Momo

Thank u, im not at breaking point yet but I no I will end up there if the Drs keep ignoring me and my gp actually sees me as a burden cos last tho I od'd he had a right go at me and shouted at me and I feel like he doesnt care anymore and that im just a hypochondriac which is horrible. Thank u for your support it's nice speaking to others who suffer pain xx

Dizzytwo
DizzytwoModerator

Can you not look for a new doctor by changing surgery? xx

Dawnfybro82
Dawnfybro82 in reply to Dizzytwo

Everyone keeps saying I should change practice but im worried cos the other Drs in my surgery won't deal with anything to do with my pain meds cos its my own gp that deals with it so I always have to go to him and I've also had a few Drs say that they don't agree with me being on fentanyl for endometriosis and they would never dream of giving their patients fentanyl as it's for end of life cancer pain and it's also for severe pain management which is why I'm on it but they just don't agree, im on baclofen for muscle spasms and cramps and a Dr had a right go at me saying I do not have MS which is what it's for when in actual fact it states it's also for muscle spasms and back pain so im scared that I'll change practice and be taken off everything so i feel a bit stuck x

Dizzytwo
DizzytwoModerator

Would you mind if if I ask what medication you take?

Dawnfybro82
Dawnfybro82 in reply to Dizzytwo

Fentanyl patches 37mcg dihydracodiene 30mg x 3 per day max of 21 a week, 350mg pregabalin a day and baclofen as and when I need it, I'll push myself as far as I can go before taking the dihydracodiene and baclofen and ill miss a day here and there of the pregabalin and that's to stop or minimise me becoming dependant and addicted to them. Problem is none of it is helping just now cos my pain is so severe it's now affecting my mobility in that I can no longer walk much, even going to the toilet causes severe pain but a year ago I was on 75mcg fentanyl 600mg pregabalin and I was getting 56 dihydracodiene a week and even tho my Dr can see how much pain im in since reducing my meds he wants to reduce me further and refuses to put me up or give me more

If you did change surgery the new Dr would deal with all your medication and not your Dr now, he would have nothing more to do with that, are you afraid a new Dr wouldn't give you any medication?

Dizzytwo
DizzytwoModerator

I see you did go to a different doctor a few years ago who said you had Fibro. May I ask why you did not stay with that GP or consider seeing him/her again. Is the GP you now see prescribing the medication your now on for your Fibro or for some other pain problem?

So sorry if I sound nosy but just trying

to get a clear picture of what your dealing with.

I must say right here I and everyone on this forum have no medical expertise. But we have walked in your shoes. Do you work at all or have a family you can rely upon. It's alway a help when we have some one who understands xx

The Dr who diagnosed fybromyalgia was with the same surgery as my gp and I went to him cos i suspected that I had fybromyalgia and my gp had already said he didn't think i had it so I went to someone else and I was never put on anything or referred to anyone when I was diagnosed I was just kept on the meds that I was already on which I listed in my last post. I tried to see that Dr again but he said because my own gp has been dealing with my pain for so long he didn't feel comfortable getting involved with any of my pain conditions or meds and I should see my own gp, other Drs have said the same thing. I've not worked for 5 years cos of endometriosis pain and now fybromyalgia hips back and legs pain I don't have a partner or kids and I don't really get any support from family and I've only a couple friends cos i lost a lot of friends over the years cos no one can be bothered with someone when all they do is moan about pain all the time or can't go out because of pain. Xx

Dizzytwo
DizzytwoModerator

Sorry if I sound dumb but a lot tell me I am lol

So your on no fibro meds and the meds you are taking are for something unrelated to Fibro is that right?

Not sure how the other GP diagnosed you had Fibro. But if he thinks you have this then follow up tests should be done to make sure his/her diagnoses is correct.

Unfortunately for many pain medication does not help their pain. You need to talk with another GP Imo it's obvious what your been treated with is not helping you. So may I ask why worry about it been stopped and hopefully new medication been offered by a new GP xx

Hi my lovely i hope you are well today I feel for you i really do because I have both endometriosis and fibro just having endo is enough for me I was diagnosed with it over 20 years ago and diagnosed with fibro last year I completely understand how you are so frustrated with your gp surely knowing you have just endo alone is horrendous and despite trying different treatments to control it sometimes nothing helps and painkillers are the only option i seriously do think that you should change your surgery i had to go to several different gp.s before I found one who listened to me and understood how bad I was and helped me and to this day still does and I think you need to do the same it may take a few Dr's you have to go to before you find one who is more compassionate and understanding of your needs but you will get there maybe telling your gp that you are buying painkillers from friends is not a good idea in the sense that they will just be thinking you have an addiction and that's why you want painkillers and as other people have said on here there's the samaritans who are really good and will listen to you i hope you get the help you need my lovely take care 💖xx

First things first, make sure you have your local crisis team contact information and the Samaritans number stored in your phone for when you need immediate support.

Have you considered requesting a rheumatologist appointment? They will give you a definite diagnosis and send your GP treatment recommendations. If you ask and have good cause (like a symptom diary or fibromyalgia assessment with a positive result) they aren’t allowed to refuse. This is the same as the form I did at the hospital.

neuro.memorialhermann.org/u...

You can self refer into talking therapies which will get you a proper mental health assessment and psychology input, I had a few group sessions on pain and pacing and it really helped refocus me, after the short course I could have gone back in for further assessment but declined as I had found a self study path that worked for me.

Having a GP that is reducing pain meds isn’t necessarily a bad thing if they are looking at other ways to help. The pain meds treat the symptoms not the cause and some of them like tramadol and tapentadol can even make the muscle pain worse. Stopping tramadol was the best thing I ever did.

If you need extra pain meds buy over the counter cocodamol and ibuprofen to top up the codeine

Magnesium and vitamin D supplements have been shown to help ease fibromyalgia symptoms. Light therapy each morning helps too. Walking isn’t always the best option when your de conditioned from lack of activity, core work and light resistance work is a better place to start, exercise in water is great if you can find a warm pool to work in and all have scientific back up.

The best thing I found is still being researched - CBD oil, it made reducing the pain meds a lot easier. I’ve gone from bed bound on 8 tramadol a day at New Year to over the counter strength meds and finishing my year at uni because of the above combo. Yes there are still bad days if I over do it but they are fewer and far between.

Good Luck, stay strong, you’ve got this XX

Been in the same boat i am also 35 i have 2 teenagers and a toddler i started with fibromyalgia literally since the day i gave birth to my youngest so at a time when your ment to be so happy i was miserable struggling to take care of my baby when every day i was in so much pain i would be holding my son feeding him his milk and be crying my eye's out in pain i honestly could not even guess how many times i saw a doctor over the next 3 years getting fobed off with co codamol i seen every doctor then i had to move so changed doctor's and again the first 3 doc's i saw didn't want to help but the 4 took me off co codamo and yes gave me other painkillers and increased the pregabalin but better than the meds he actually wanted to help and every appointment i have with him he goes out of his way to help i now am taking pregabalin,dyhrocodine,and have fentanyl patches which yes is a lot but i don't care as long as it helps my day bareable and means i can be a better parent recently I've been struggling pain wise and have had fatigue to the point where I'm falling asleep on the couch with a full cup of tea in my hand so i have a appointment coming up and I'm not dreading it because i know my doc will try his best to help so i would defo recommend changing surgery try every doc you can if u still get nowhere make a complaint against the surgery just keep fighting until somebody takes you seriously 💪

M0AL61
M0AL61Moderator

I also meant to say in my reply to you last night - please DO NOT either buy or take any kind of medication from anyone else. They have been prescribed for someone else, and eve though they may be something that you take or have taken in the past, it's extremely dangerous (and I do believe also illegal) to do so. I don't mean to be hard, rude, nasty etc, I honestly do have your best interests at heart.

As some of the others have said, a new surgery might be for the best. If your current meds aren't helping it might be time to try something else, and a new surgery and a new GP will be starting from anew.

I really hope that you can find a way to get your pain under control, without having to resort to buying / getting meds from friends.

(((Hugs))) xx

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