Hello fellow sufferers!

Hi all,

I've been on here for a couple of months but this is my first post. I've never really been one to talk about the fibro, but I've found myself in a sticky situation.

I have been suffering with fibro for about 8 years but was only diagnosed last year. I am on a multitude of different pills as I'm sure a lot of you are. But what I've noticed is I'm on different pills to most other sufferers. Also, my doctors are useless and since being diagnosed, they have given me very little help or support. In fact, they have stopped my anti depressants without even telling me! Every month, they also leave me without medication for about 4 days because their prescription process takes about a week but I can't get my medication until I'm just about to run out!

I'm 23 but most days I feel like I'm 83. I try to get on with it and work full time, but the main issues are the pain, the fog and the sleep (or lack of!) I've tried everything to help but go through each day like a zombie with one brain cell!

Any advice or suggestions would be awesome. Or even if you want to have a moan, feel free!

All the best,

Katy.

19 Replies

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  • Why on earth are they making you wait till you've run out of medication before you can request more?! Ask them to review this for a start, so that you can get a repeat prescription on the go before your current pills are all gone.

    What medication are you on? x

  • I agree with the other poster. Have a word and try to get your meds on repeat so that you don't have to wait until you've run out. My meds aren't on repeat (they keep trying me on different things) but with my gabapentin which I've been on for two months now I usually bob in about a week before it's due to run out and ask for another. They shouldn't leave you with no effective pain relief. Ask them how they would feel if they were in your shoes. I've said that a few times to my docs and their attitude has changed.

  • Hello Katy

    Welcome :)

    I'm sorry to hear you are suffering so badly. I wouldn't worry too much that your medication is different to other people's. There could be many reasons for this due to the fact that Fibromyalgia is a syndrome, meaning that other conditions are also present.

    However, having said that it does sound as though your surgery is letting you down very badly. First of all, is it possible for you to change surgery? Secondly, get in touch with your current surgery and ask them how long it takes for them to process a repeat prescription. My surgery takes 2 working days, so I have to factor in the weekends as they obviously don't count.

    Do you have a GP that you usually see at your practice? If so, try to make an appointment to see a different GP in your practice and ask why your antidepressants were stopped? If you think you will find this hard to do, take a family member or friend with you for some support. GP's tend to be on their best behaviour when you go along with someone else. It is extremely bad practice for your antidepressants to be stopped without warning.

    There are various clinics and other help that your GP can refer you for, but unfortunately in general, you will need to ask your GP to do this, as they wont necessarily do it themselves.

    I do hope that some of this is of some help.

    Please do try to change to a new practice, but before you do so make sure you have enough meds to keep you going. It takes about six weeks for your notes to be transferred over and during this time you won't be able to request any meds.

    Hugs

    Lu xx

  • Hi and welcome Katy. My advice to you is leave that practice and go find a better GP ASAP. That is a joke, just not good enough! Good luck and take care x

  • Thanks all,

    My doctors are a nightmare. I don't have a specific one so am having to constantly repeat myself. I've spoken to the practice manager about the time it takes and she has tried blaming the pharmacy saying they refuse to pick it up so it has to be posted which is a lie because I have spoken to the pharmacy too and they have said the surgery refuse to let them pick it up!

    I am trying to change doctors but because I work full time all week, this is a nightmare. I also only get a months supply so I'd end up being without my meds for two weeks. But I'll see what I can do as we also have an out of hours go at the hospital so they may be able to help.

    The meds I'm supposed to be on are 30mg of citalopram, 400mg of tramadol, 10mg of amitriptyline and 15mg of mirtazapine. But they have stopped the citalopram completely.

    I've tried the guilt trip and telling them to spend a day in my shoes but it doesn't work. I've quite literally been on my knees begging them to stop messing me about but they just don't care. My partner is really supportive but she also works full time so it's difficult to get the time off together to go.

    I feel like I'm stumbling around in the dark looking for a non existent light switch!

    When I change, I will ask the new doctor about the groups and stuff.

    Cheers,

    Katy.

  • Hi again Katy

    It's just a thought but I wonder whether they stopped the Citalopram as you're already on an antidepressant. However, it is perfectly safe to be on two antidepressants at once so long as your GP is ok with it.

    The best thing you can do, other than to swap surgeries, is to put your issues with the surgery in writing to the Practice Manager.

    Personally I would not put in an Official Complaint because then you won't be able to get any more appointments with them, but I would say that you are having real difficulty getting your meds and could they please sort the problem out for you.

    Once you've written to them they have a duty to reply and take care of the matter.

    Hope that helps

    Hugs

    Lu xx

  • Hi Lu,

    They were supposed to be swapping my meds from citalopram to the mirtazapine to help me sleep. It was supposed to reduce one and increase the other. But instead, they have stopped it. I seem to be doing ok at the minute so it's not too much of an issue. But I need to get a reliable doctor who are willing to help which is my next task. I try to concentrate on one thing at a time otherwise I completely forget what I'm doing with everything! Lol.

    I hope all doctors aren't as awful as the ones I currently deal with!

    Also, how do you sleep? Are there any techniques or anything that you use? I've tried relaxation techniques, meditation, medication, soothing music...etc. As I said in my original post, I'm 23. I feel like I'm missing out on life because I can't sleep and im too tired to do anything when I get home from work.

    I'm really new to all of this because I haven't had any support from the doctors.

    Cheers,

    Katy. X

  • Hi Katy

    Unfortunately it's just the luck of the draw with GP's. Some are great others are about as good as a chocolate teapot lol x

    I don't know how many practices you have in your local area but you could try phoning a couple of them and ask if they have a GP who specialises in Fibro.

    I really do appreciate you're busy at work, but you need to find the time to get a good GP.

    Regarding sleep Amitrylptiline is mainly an antidepressant, but it is good for sleep and pain. But, and this is really important, if you change to Amitrylptiline you must take it around 6-7pm otherwise you can end up feeling groggy the next morning, which is not good when you have to get up for work the next day.

    Sleep (or should I say lack of it) is a massive problem for the majority of us. I tend to sleep in 2 hour shifts then I'm wide awake again for a while before I get back to sleep. Getting good quality sleep eludes most of us.

    I would definitely recommend you try Amitrylptiline as it does suit quite a few people here.

    If there's anything at all you'd like to ask me fire away or pm me. I've had this rotten condition over 30 years. I'm not a doctor but I may be able to point you in the right direction for a few things.

    Try not to delay in sorting your GP. With Fibro you never know where you are from one day to the next. If you suddenly have a flare or start feeling depressed you need to be able to see someone quickly.

    Also if you wanted to be referred to a Pain Clinic there's approx a six month wait for an appointment.

    Lu xx

  • Thanks Lu,

    I am already on amitriptyline and also take mirtazapine for sleep and depression and it does help somewhat. But the longer I'm on it, the less effective it becomes.

    I will go to the out of hours clinic tonight about the meds and ask for pointers towards fibro specialists, but I don't hold out much hope. I will update you once I am out. :)

    Katy. X

  • Hello love

    It's worth trying to find out. You could call a couple of surgeries and see if they have anyone who knows about Fibro.

    It's a great idea to check about meds at the out of hours clinic. It's worth asking them about whether they have anyone who knows about Fibro whilst you're there.

    I've been on Mirtazapine for over 30 years. I sometimes think it's stopped working as much but in reality I think it's because I am getting very low in myself rather than the meds not working.

    Please do update me. I want to do everything I can to help you.

    Fibro is a minefield and I'm still picking my way through it 😁

    Love Lu xx

  • Hi Katy,

    I was prescribed Mirtazapine by a sleep consultant to try and get me off to sleep and to keep me asleep longer at night. I found that after a few weeks the 'sedative' effect declined and was of no use. I was on the same dose as you at 15mg/day

    As other posters have said, Fibromyalgia is a syndrome and not every medication is tolerated by all, neither is every medication suitable for all.

    You are on a very small dose of Amitriptyline at 10mg daily.

    Are you suffering depression?

    The therapeutic dose of Amitriptyline is (I believe) around 300mg.

    It is also recommended medication for pain relief and to promote better sleep for Fibro suffers at a dose of at least 30mg. It should be taken for one week at 10mg, then a week at 20mg then up to 30mg for a period of time to see if it is effective.

    It can then be increased up to (I think) 70mg in order to be an effective therapeutic dose for Fibro.

    If you are not depressed, I would suggest you discuss reducing the Mirtazapine

    gradually as you increase Amitriptyline (as above) with your GP. Your Mitazapine dosage does not appear to be a therapeutic depression dose. It may be that, as you see different GP's within the practice, they are not fully conversant with all the medication you are taking.

    I would also suggest you ask the practice manager if you can have appts made with one (sympathetic) GP as far as possible.

    Meanwhile, you may find it useful to get hyontist recordings from he internet to help you relax, and also ask for a referral to a pain clinic in order to get a course on how to manage your condition -very useful to help you pace yourself.

    Maggie xx

  • Hey, I didn't manage to get to the doctors as I became really ill. I think this is due to the withdrawal. Unfortunately I do suffer from severe depression which is why I'm seriously struggling and annoyed.

    My partner is taking me tonight because I've just been breaking down all the time and am really not well but am still trying to work. Although I'm feeling very disheartened at the minute as my self esteem and self confidence has plummeted. But I'll get there. :)

    It's amazing to know that there are people like yourself that is there to talk to. I really appreciate it.

    Katy. Xx

  • Best of luck at you GP's, healing hugs xx

  • See reply below Blue Mermaid

  • Have you tried printing out a fact sheet explaining what fibromyalgia is? Also they should have all your info on file! I live in states so insurance here prevents them from filling some prescription early. Also there are some that do require docs to send in new prescriptions the day it is due. We have too many people that abuse certain drugs here. Just my thoughts. If they are not willing to work with you by all means find a different doc!

  • Welcome to the forum and it is wonderful to make your acquaintance. I would definitely ask for a medication review to help alleviate this issue. I would also ask for some referrals such as Pain Management and / or Rheumatology.

    I want to genuinely wish you all the best of luck.

    All my hopes and dreams for you

    Ken

  • Hello Katy,

    You are entitled to a good standard of care from your GP, whichever one you are seeing. The fact that you are unable to take your meds sometimes means that you are probably suffering from withdrawal effects on top of everything else. The surgery should have an online facility to book appointments. The same facility is used for repeat prescriptions. You request it online and then a couple of days later you pick it up from your nominated pharmacy.

    If it were me in your shoes, I would take the following action.

    Try to get to see the same GP all the time. Was there one with whom you had a good rapport?

    Speak to the practice manager to see whether they have the online facility.

    Schedule a monthly visit to the GP for a medication review and check up on whether you are getting the right support.

    Request a repeat prescription for existing medication so that it renews automatically.

    If nothing worked then I would have a chat with friends nearby to see where they go to the Doctors. Then change surgery.

    I really do hope that this totally unacceptable situation changes for the better.

    Best wishes,

    Dave

  • change docs...or second opinions. and, 23!!! you're so young to have these things. m sorry about that. I am 53, and feel like I am 83 as well.

    it took me a long time to get a doctor that would finally listen to me, and she is great. it just might be a process of elimination to get the right doc. and be your own advocate, and be very assertive in your needs.

  • Hi guys! Just an update. My partner called the emergency who gave me a prescription of my antidepressants and some diazepam to help immediately. So I'm not feeling really low now as I was in a really bad place.

    I have an spot at my current go on Thursday so will update again. But I'm hoping to get 2 months of prescriptions so I can then change doctors without having to worry about my meds.

    I've also started doing some exercise and I slept better last night after doing it (still not great though!) but am feeling it today!

    So all in all, things are looking up.

    Thank god for my angel of a partner!

    Love to all, hope your day isn't too affected by this affliction.

    Katy. Xx

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