Anyone care to comment on my medicati... - Fibromyalgia Acti...

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Anyone care to comment on my medication or share their own?

52 Replies

Hi all I'm new here and Id just like to hear anyone's opinion on my current medication:

I've been given a tentative diagnosis of fibromyalgia and am still in a process of trial and error with medication.

I'm currently taking *Deep Breath*

600mg gabapentin 3xDay

Max paracetamol 4xDay

Max ibruprofen 3xDay

20mg baclofen 3xDay

100mg tramadol 4xDay

60mg Duloxetine 2xDay

10mg nortryptaline at night

I'm still not pain free and when I get an episode of more severe pain I'm in total agony. I use all the usual warm baths, relaxation, hot water bottle, attempts at exercise etc but finding a balance is proving very difficult. And I take all meds all the time so don't have anything to top up on. I did have diazepam previously before a lot of the above were prescribed which were perfect but I can't seem to get them prescribed and im lectured every time I request about how they shouldn't be given long term as they are addictive.

My GP has seemed seemed quite content upping doses and adding more and more meds to the list. But I think now I'm on max everything and she's come to the end of what I can be given. Im not sure how strong an opiate I might be given or can realistically ask for - I guess I'm curious to what others are taking. I'm not back at pain clinic until June but I'm seeing a clinical psychologist and physiotherapist in April to look at chronic pain management course but I don't know what to expect from that.

Any insight into my meds and any suggestions for swaps or changes greatly received. I now have no clue which medications help and which ones don't now but I dare not give any up for fear of serious lapse! I'm not feeling high/drowsy/sickly on these meds the only problem I have is grogginess from nortryptaline. I have to keep telling the doctor that I'm not trying to get stronger or more medication to abuse them Id just like to be pain free!

I've had all relevant referrals I think and researched as best I can and looked at all sorts of websites but I can see the best resource is other people with fibro, I know pain relief is individual but after months of experimenting my pain isn't controlled.

Any comments positive or negative greatly received

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52 Replies
glochessum profile image
glochessum

I went to the pain clinic last week and they suggested I took the slow release tramadol and so far I'm finding them quite beneficial. They've also changed my anti depressant from Venlafaxine to cymbalta. I'm still waiting to see if that has any effect.

Good luck with your appointments, I hope you find some relief.

in reply to glochessum

The duloxetine is cymbalta so we are on the same there and thank you :-)

katie72 profile image
katie72 in reply to glochessum

Hi

I'm on venlafaxine but want to change as the side effects are horrendous. Did they just do a straight change with you or did you have to reduce the venlafaxine first and come off it? I'm at pain clinic next week so will suggest a change as I don't think the venlafaxine is working for me.

Kate

glochessum profile image
glochessum in reply to katie72

I'm doing a straight swap from 300mg of Venlafaxine to 60mg duloxatine (cymbalta). This is my fourth day and so far I feel fine.

in reply to glochessum

I've been on duloxetine for ages and I find it great for my mood and anxiety, not sure of its pain effects. I had awful withdrawal when switching from citalopram even though it was done gradually while taking duloxetine URGH

in reply to

Just to add I take 120mg in divided doses morning and late afternoon. If I take too near bedtime I can't sleep - just incase your dose is increased 😊

Hartleyhare2 profile image
Hartleyhare2 in reply to glochessum

Your lucky! My first two weeks were awful but then settled down!

in reply to Hartleyhare2

I was having major withdrawals from the citslopram so I was already feeling terrible so could be partly to do with the duloxetine - I've no clue x

Ellejm profile image
Ellejm in reply to katie72

I'm assuming that you are on the 37.5 venlaflaxine, I used to take that and was so so I'll, put up to 150 slow release and not a single side affect and have been on it years..

Marky profile image
Marky

Hi

You seem to have most bases covered by all the different groups of medication. You are already taking two of the FDA approved drugs for Fibro.

You could look at moving from gabapentin to pregabalin if not already tried.

Diazepam is not usually prescribed long term. I myself moved from Diazepam to Baclofen.

You could also ask for a stronger NSAID than ibprofen. Something like Naproxen, Celebrex or Meloxicam.

Have you looked at any of the topical analgesics such as

Capsaicin cream?

Tramadol is classed as a weaker opiate. There are much stronger options available and come in slow release and fast acting. However there roll in treating fibro is unclear and come with there own side effects.

I myself use oxyNorm 5mg for breakthrough pain.

Hope you find relief soon.

Take care.

PM me if you want more info on meds.

Mark

in reply to Marky

Pregabalin is a good idea as is the change of nsaid, I just thought I was being given lots of different things but never got to the bottom of my pain. I'm not even sure that the gabapentin and tramadol actually do anything 😂😂😂 thanks for your suggestions

cruz profile image
cruz in reply to Marky

Hi Mark, which drugs are the FDA approved for fibro?

Marky profile image
Marky in reply to cruz

Duloxetine and Pregabalin are FDA approved for Fibro.

i wouid try to cut down the tramadol they stop working after a while and all you do is take them becuase of the addiction. i only take 2 x 50mg at night now. just to stop the withdrawal. good luck

in reply to

Thanks for that, I'm not even sure they do anything for me. It does make me feel better thank nobody has been shocked by the number of meds I take. I have no clue what's "normal"

cruz profile image
cruz

All my doctor has given me is Paracetamol and Ibrupofen which are useless, he told me to take up exercise, I do walk every day with my dogs but I joined a gym on his request, first time I just swam, found it very difficult, went in the jacuzzi because I was told that would help and finished of in the steam room, well that was Saturday 21st March, I did not sleep Saturday night as in so much pain and Sunday was a wash out, I did intend to go back to the gym but could not make it. I seem to have developed a pattern, I work all week in an office and my pain is very controlled as in all honesty my job is not excertive, then comes to Saturdays I do my housework, shopping walk the dogs and boy do I pay for it, come Saturday afternoon I was in agony again so did not manage to get to the gym but went on Sunday morning as was feeling a bit better, even managed to do 5 mins on the treadmill and bike, did a swim that was much better than the week before and finished of in the steam room, went to Asda just for a few bits and then came home feeling ok. I sat down to have my breakfast and then it started, the pain just got worse and into the afternoon I was so stiff and in pain, Sunday night was horrendous trying to sleep as every time I turned over to get comfortable the pain was excruciating, in the end I took 2 x 400 ibrupofen and finally managed to get some sleep, and up at 6:30. My doctor won't give me anything as he says fibromyalgia is not life threatening but some tablets cause ulcers which are life threatening, I do need something as I can't go on like this, being in pain for so long is just so disabillitating and just gets me so frustrated and down. Is there anything that will take most of the pain away if not all!! I need help!!!

in reply to cruz

Wow, I guess I'm lucky that my GP is very understanding as at first I felt stupid going back almost every week saying I was in terrible pain. I got referrals in information plus medication. What im taking isn't perfect but I'm getting there through trial and error.

Can you change your GP? Good luck

janh profile image
janh in reply to cruz

Hi there

I have tried all the painkillers that you mention but am allergic to them all except Lloyds own paracetamol. I am now on a fentanyl 12mg and 25mg patches with the tagaderm patch to cover them. I also use lidocaine patches and 10% ibuprofen gel if necessary. I am also on steroids. However least week I had a steroid injection in my thigh and I had my first pain free day in years. I have managed to cut down on my steroids and have only used one patch and no gel since last week. I don't know if this will last but I'm definitely not in so much pain.

I also have a shattered spine from osteoporosis so this makes everything a challenge.

I find exercise has always made the pain far worse everywhere and I really should pace myself but it's so difficult not to try and do more if it's a reasonable day. I try to follow the mindfulness technique and that really helps.

Good luck with the drs and ask about the lidocaine patches and whether a steroid injection would help.

Best wishes

Jan h

in reply to janh

Thank you for your response. I'm hoping to discuss the more heavy duty pain meds and injections if needed when I see pain specialist in June as my appointment is around 60-90 minutes and it's a good discussion and examination. Until then I think im going to ask GP for a swap from gabapentin to pregabalin and ibuprofen to naproxen and hope for more relief. As I'm seeing a physiotherapist and clinical psychologist in late April they may also have some specific suggestions based on my symptoms.

I'm not sure if my GP would be alltogether comfortable with prescribing me stronger opiate type medication than the tramadol im on - I just get that impression plus it's hard in 10 minutes to have a full discussion about anything (grrrrrr nhs)

I'm still not pacing myself, every time I get a moment of clarity I jump on it and tire myself out then pay for it - like a never ending cycle! Just something I need to get my head around.

Im keeping an open mind on treatments as I had a very warm bath and I'm using a hot water bottle right now with great relief but doesn't always work.

cruz profile image
cruz in reply to

Problem I have is I cannot get a bath as I can't get out, my wrists and knees just won't let me, its so annoying!!!!!

Telynores profile image
Telynores in reply to cruz

Do you have anyone to help you at bathtime, baths are so beneficial.

in reply to Telynores

Yes, I do and I use Epsom salts/herbal bubble baths. I find it helps with stiffness/aches, sleep and relaxation 👍🏻👍🏻👍🏻

I can't easily and safely get in and out or get the towel without stretching. I sometime find it hard to wash and dry my hair or wash my back but have a very supportive partner that helps me when I need it. My mum also helps if I stay with her or we go to her caravan.

I'm not sure what I'd do without him, obviously not just for helping me but in general!

He's really great and I'm very lucky as I realise not everyone has the same relationship with their

partner or mum

Telynores profile image
Telynores in reply to

Yes, you are fortunate. I live alone, the closest member of my family is 4 hours drive away. I have carers so fit in baths twice a week but not to go straight to bed as it's meal/personal care all in one call. My cat loves being in the bathroom but is no help :-/

I must apologies that this thread was last used over a month ago until I, just scrolling through, didn't realise.

in reply to Telynores

No worries 😂

I know what you mean about your cat not being much help, I have a cat too and he's deaf and the only help I get from him is when I feel down and he looks after me by putting his head and paws on my lap 👍🏻

If I didn't have the support I do I'd never have been able to go back to work after my last lapse as the effects have stayed with me now since January 👎🏻💩

I'm hoping to be awarded pip so I can afford extra support with cleaning, laundry and ironing etc.

I had my assessment last week so I'm very hopeful

Telynores profile image
Telynores in reply to

Oh, my cat bless him has dog-like tendencies and is a comfort, he used to sleep on my chest in the day or my hip at night but seems to know that it hurts and has stopped doing that :-)

Good luck with your PIP, in my DLA application I sent three sets of reams of info with my prescription. I was awarded indefinite high level care and mobility, such a huge relief :-D Until they change me then I guess I'll have to go though it again :-(

in reply to Telynores

Awwww cats are so perceptive of things like that! My Eric was the runt of a litter of kittens that all had various things wrong with them. My friend begged me to take him as his mum rejected him and was worried that a little white ball of fluff would die. I took him and fed him etc it was hard work but worth it. He has some strange tendencies and when he was young I had a cat behaviourist to see him. I was told he would probably never mix well with other cats as he likely hadn't learned certain things like how cats greet and how relationships are formed. Trips to the vet are horrific so last time I was given Xanax to state him a little - all it did was make him wobbly on his feet and ridiculously hungry and still aggressive. Bless him the vets now have "warning - too dangerous to handle" on screen for him 😂😂😂 too funny!!!

I submitted loads of evidence with mine, but have to wait and see now.

I'm still working but as I'm on phased return after long term sickness it's not too bad, I'll really feel it when back to work full time. I'm dreading it! I just block everything out and do my job but when I get home I'm so exhausted and drained all I want to do is rest and sleep but most of the time I'm in too much pain to do so, the amount of times I don't sleep at all is increasing.

My doctor sorta wants to encourage me not to be at work instead of supporting me to maintain my attendance. If you get me?

If I get pip at least I don't have house jobs to think about, it's also my plan to try drop some hours temporarily but I'll see about that, I have a good job, very responsible and well paid - pip rates can't replace my wages but they can certainly pay for the assistance I need and I'm more comfy with the personal care type assistance done by my partner .

I can imagine what a relief it was for you. It will be for me if I get it, otherwise I'll have to appeal etc and seriously consider all my future 👎🏻💩

Telynores profile image
Telynores in reply to

Bailey is a very pretty farm born cat, two of the litter looked Siamese, his sister was tiny, I tried to get hold of her to stop her being used for breeding but the farmer wanted to gain another breeder in exchange. Bailey has a 'funny' backend, I presume his sister would have too. His temperament though would probably be 'stunned' into submission.

The trouble with having others doing the housework etc. is that they don't do anything as well as I would wish, it's so frustrating. I do bits when I can, 10 minutes vacuuming yesterday, still plugged in ready for nest year or sometime :-/

I hope you application goes well :-)

J4xx profile image
J4xx in reply to cruz

Hi Cruz, I'm sorry you've not had any support from your GP. I gave up the gym, many years ago.....it nearly killed me. Is there another GP you could see? Could you ask for a referral to the pain clinic? I hope you fined some relief soon.

J x

Lruk profile image
Lruk

Hi M3rcury78, it is very unlikely that the tramadol and gabapentin are doing nothing for your pain, I have no doubt that you would be seeing a massive increase in your pain without either of them. As Maco100 said, the tramadol are very addictive and while they will help the pain short term, they will eventually stop being effective. I have found pregablin to be more effective than gabapentin, apparently gabapentin become pregablin in your system so taking them instead cuts out the middle man, according to my GP. I cannot honestly say I have felt any significant reduction in my pain. I would try to hold on until you see the pain specialist as they should have someone who is more knowledgeable about what might work and what might not. I found the pain clinic's weekly sessions had some relevant bits but it was the pain nurse that helped with my medications. I am not pain free but I am not in the daily agony that I was previously. Good luck, Linda.

cruz profile image
cruz in reply to Lruk

Is the pain clinic only open in the day time?

Thank you, I see my GP tomorrow and will discuss pregabalin and maybe a change of NSAID, I'm just impatient and want to be pain free. Im not used to pain as I have a high pain threshold and even after major surgery I've taken limited meds in the past. Id like to get to a point where my day to day pain well controlled and just taking something like tramadol as an extra if I have a really bad day.

Susan20067389 profile image
Susan20067389

Hi welcome to FibroAction,

Here is a rather long message, I apologies in advance. But it's just what I have learned in the past and suggestions that may help you as I remember being told I have this strange new condition that I can't even pronounce let alone spell. But in all honestly its all trial and error with this condition.

Anyway I hope my suggestions help you. I no everyone is effected differently. But if you have any questions please don't hesitate to contact me. (Apologies on my spelling 😄)

My name is Susan I have had Fibromyalgia since 2012 when I was 24 years old. I'm now 27.

I would defo ask your GP to refer you to a Pain Management Clinic like Glochessum suggested. I wouldn't say your on the maximum of Gabapentin as I was on that and I no they can put you on a much higher dose. I used to be on Gabapentin but they stopped working so my Kidney Specialist admitted me to hospital to get my pain under control.

While I was in I was re-reffered to the Pain Managemant Team/Clinic, the consultant has since taken me off Gabapentin and now put me on Pregabalin which is GREAT!! :D I am in no pain what's so ever. Apart from the odd flare up now and again (which are as you put it, more severe pain). I was taking the Pregabalin in the morning and in the evening but I found I was completely not myself and my family were becoming concerned as all I was doing was sleeping all day and all night as they make you very tired while they are first getting in your system. Maybe you could ask your consultant at the Pain Managemant Clinic if they are struggling on what to try you on next ask about the TENS Machine I'm currently looking at one for my kidney pain, but it has also been known to help people like us.

Also maybe ask your consultant to try you on Fentanyl Patch on the lowest amount. I currently use them for my ACKD, I orginally started on 25mg and 12mg. But if you ask to try the lowest amount and see how you go with it. I'm now on the 50mg patch, with a tegaderm clear dressing to keep it in place, I keep it on for 3 days i.e. 72 hours then change it. I tend to alternate where I put it on my body, my thighs are the best place for it so I tend to alternate between each thigh, if I have accidentally left it on more then 3 days, I take it off as soon as I remember and then leave my leg to air for a bit. The only side effects I have experienced from these are itching all over your body which is normal, and the feeling that when your asleep your not getting enough oxygen to your lungs so you wake up gasping for air. But once your on your 3rd patch that will/should subside.

So what I have done is take it every night as usually and then alternate when I take it in the morning otherwise I look like a zombie (without the blood lol 😄, as I found it very hard to function during the day).

I have to say though be VERY VERY careful with the ibruprofen as its VERY VERY bad for your kidneys, it can cause damage to them. As I have to avoid it completely, due to my ACKD (Adult Chronic Polycystic Kidney Disease). As for the Diazepam I was given that for hip pain before I was dignosed with Fibromyalgia and this can also damage your kidneys as well as become highly addictive.

I have an electric blanket in my bed which has been great over the winter as they cold isn't kind to us at all. It's our worst enemy if I'm honest. I have also used Deep Heat in the past just to help with some pain in and around my joints and I have to say it does help, though it doesn't take all of the pain away but however it does take the edge off 😊.

I do understand the problems when you want to exercise, as I have tried to go to the gym like most of my friends and family, but unfortunately over working our joints, can make us suffer with pain. For example I have been out walking before (as I don't like to use the gym as I'm very self-conscious of myself), I enjoyed some of the walk but then my legs and hips began to hurt and then each step was torcher. The next day after my walk I was in so much pain I cried. I ended up being house bound for 2-3 weeks as I was in so much pain. So what I do now is know my limit. Once I reach that I stop.

But the one thing that helps me and which I no a lot of people with fibromyalgia do is swimming it's a good way to keep fit and it doesn't over work our joints also the warmth of the pool will help ease any pain we may have 😀.

If you are struggling with balance as to see an O.T. As I have seen a few and they have gave me great advice, as I can be a bit messy at times so if there is anything on the floor to pick it up if I can, as I may trip or slip on it, as I tripped over some laptop wires last year and fell over and landed on all fours, my words were oh crap.. Not cause I had fallen over but cause I new at some point I would get the backlash of the pain, I had grazed my knee that was about it 3-4 months later the pain hit me out of the blue and my god it hurt. The only place I could get relief from the pain was lying down in bed, but then family would call me lazy, I would just ignore them as I new what would make the pain go away. As it was the muscles in my shoulder-blades that was causing all this pain and sitting and standing made the pain so unbearable.

I also have adaptions around my flat. At my front door as it's an awkward step I have two handrails on either side of my door which comes in handy when it's been snowing to test the ground, just in case it's slippy under foot. I have a heighten sofa as I'm tall and find when I have been sitting for too long my legs seiz up, I have a perching stool in my kitchen as I find it hard to stand so I use it when I'm cooking or doing my dishes. I have a trolley on wheels with 2 shelves which comes in handie when my balance is off and I need to take food and a drink into another room.

All I do is put in on there and wheel it through into my sitting room. In my bathroom I have a bath lift which is great and comes in handy, though I tend not to use it when I have a flare up as when I have a really bad flare up I can't even bath as lifting my arms and legs is extremely painful all over my body. So depending on how bad my flat up is I can go days without a bath. My longest flare up was 4 months, though I was living with my dad then and we had a chair that went in the shower so I would use that. As I was house bound I would just wash my body as I was unable to wash my hair. My sister would come over and help me with my hair, but that was just before I was dignosed with FMA (Fibromyalgia). So also in my bathroom I have 2 more handrails, 1 long 1 next to the bath and a smaller 1 next to the toilet. I also have a higher toilet seat from the OT also because I'm so tall it makes it so much easier. The handrails do come in very handy for me as when im coming out of the bath I can use them to help with my balance and also if I'm feeling weak I can just pull myself up off the toilet or bathlift.

Then in my bedroom I have a bed leaver, which is really good. As I'm not sure if you have experienced this but sometimes on a morning I find it difficult to get out of bed, so I use the bed leaver to pull myself up. It also comes in handy during the night if I'm in pain I use it to help me roll-over.

I noticed you mentioned having problems with your balance, I also suffer from this but also because of other medication conditions. While I was in hospital last year the OT who assessed me for the trolley and the higher toilet seat, also agreed that a wheelchair would be suitable for me as while I was in hospital I would (and still do) have to buzz for a nurse to help me to and from the toilet as my balance was/is bad and my legs have a tendency to give way and anytime. So now I have a manual wheelchair, self propelled.

I no a lot of people with Fibromyalgia who don't use wheelchairs as they wish to try and stay out of them for as possible, but I only use mine as and when is needed. Though when I was first looking into getting one I was told I wouldn't be able to have a self propelled one because I wouldn't be able to push my own body weight and that it would effect my Fibromyalgia to much in my arms. But I am thankful that my Fibromyalgia only really effects me from waist down. But there there are also some people that do also use manual self propelled wheelchaits, electrical wheelchaits and scooters :) I have learned not to be ashamed about what I have.

I do struggle yes but I try to do as much as I can when I can do it.

Sorry again for the extremely long message. Just some ideas to maybe think about.

Sending warm and gentle hugs.

Susan xxx

in reply to Susan20067389

Many thanks for that, it's so useful to hear other people's experiences and opinions! I'll have a think about your suggestions but I definately think I'm going to talk to my GP about pregabalin. I'm already in touch with the pain clinic and also clinical psychology. I have an appointment with physio and clinical psychologist at the end of April and back at pain clinic in June. Just didn't feel I can wait that long - im so impatient ha ha

Susan20067389 profile image
Susan20067389 in reply to

Aww great, yeah sure defo try the Pregabalin, I do feel the benefit from it. Also I have just thought when you see your consultant who dignosed you, you could also ask for hydrotherapy session as I was offered that when I was first dignosed. But was unable to make any of the appointments due to the pain being to much for me.

As I said before feel free to contact me with any questions and concerns. As if I hadn't found this site I would have been completely lost, I am aware that depression is also linked in with this condition too.

As my fibromyalgia was triggered by my mam's death back in 2011, which that is how is say it starts by a truma in your life, like a death in the family.

Hope you are feeling better soon and I hope you get sorted at the doctors 😀

Xxx

in reply to Susan20067389

Thank you for your kind offer of answering questions, I'll take you up on that I'm sure.

I'll remember the hydrotherapy when I go to see specialist 👍

I've had issues with pain, fatigue since having 6 different operations in quick succession (the first was 2004 with serious infection due to an abscess up my bottom) prior to that I was never poorly, very active, slim but my health just went downhill from there but was always manageable but never investigated. Then had the 2014 from hell with 2 bereavements, supporting Mom with a serious MH condition, split from partner, father had heart attack then heart surgery and a finding a family member that we didn't know existed (not a negative but I big emotional event)

I don't think I need to say that by September last year I was at the end of my rope having test after test, referrals coming out of my ears, couldn't get pain relief of any decent sleep, had ridiculous amounts of time off sick I just couldn't cope.

Then came the tentative diagnosis and trial and error meds since. That's how I got where I am today.

Apologies for long post but it helps to put things into context.

marydoll1963 profile image
marydoll1963

I would like to say the first thing you will never be pain free

Imagine what it would be like if you didnt take your medication

if you truly know how all your medication works in your body

especially you're gabapentin which tricks your body to your nervous system its doing a great job along with your tramadol and all the rest of your medication . I am on similar meds the

pain management course was very informative as it makes you understand more about medication and why you have the many symptoms you are dealing with , and how to plan on days out or

trying to do certain things in the home as well as keeping in touch with people that understand your condition including family and friends the pain management helps you to plan or think what you are going to be doing and help you with medication so it is more on an even keel and not too unbearable

for you to have a better quality of life. I recommend you go to the whole programme so you can be with people that also has chronic pain it really helped me. I had to accept that I could not do certain things like taking a full washing in basket out and doing anything that I always was able to do . You go through frustration anger annoyed and grief because this should be simple things to do. After this and been given all the medication I could get I looked at other things like meditation which was hard at first then looked at how can I feel better positive thoughts instead of negative which was hard at first then listening to music to mindfulness through my psychologist iv been seeing her for 5 yrs , I had more bad days than good and done some silly things in my relationship which would make you laugh believe me, and also I looked into spiritulism what happens when you die and how can you communicate with my loved ones

Also I am now going to art and cooking classes as well as I have just finished a course in first aid in mental health which was good

I was able to understand a lot more about my own health issues as well as helping someone else who is going through some issue in there life . These were all through the council which cost me nothing. At present I am not well again been to hospital and may have something serious im in pain and lethargic at present I am taking things easy and doing little things about my house as well as meditation and watching the film frozen I like the songs

especially LET IT GO as I am letting things go along and im not worrying leaving everything to the universe. Sometimes you have to wait and see then things turn out right.

Hopefully this gives you a little better understanding .

just be yourself and let go you will soon see who are your friends and who are not no more negatively in your life only positive people then you will reep the benefits xx

mary x

in reply to marydoll1963

Thank you Mary, I think I'm at where you have been in the past trying to come to terms with the condition and it seems so wrong and unnatural to be taking all of this medication plus as a super independent person I find it hard to ask for help even when I know I need it. I just wish I didn't have it

Paulaw22 profile image
Paulaw22

You are on lots of different meds aren't you? I've had fibro, AS, asthm, arthritis, PA and now kidney Cancer and am not on that many meds! I'm surprised you with it enough to write the comment in the first place.

I normally have Amitriptyllin, dehydrocodeine, paracetamol and Sumatriptan for migrains and have injections into my spine for pain relief.

I also use complimentary therapy for example Arnica and lavender. Please don't rely on drugs constantly as you will need more and more to hold the pain back. Also these drugs can make you ill long term.

in reply to Paulaw22

This is why I wrote the post as taking this many meds seems so unnatural to me but I just can't get enough relief to live normally. I'm in a position where I want to find something a lot more suitable and useful then drop the other meds off one by one for the long term. I'm also using complimentary therapies and it's good to hear what other people use for ideas. Thank you for your reply

Hobbesgang profile image
Hobbesgang in reply to

I'm on

Pregablin 225mg twice a day

Arcoxia 90mg once a day

Dulexotine 10mg once a day

Zomorph 40mg twice a day

omeprazole 10mg once a day

Amitriptyline 50mg once a day

Severadol 10mg for breakthrough pain

Hope this helps xxx

in reply to Hobbesgang

Thanks for that! I've not heard of some of those but I will look into them - all the best x

Hobbesgang profile image
Hobbesgang

I'm on zomorph 40 mg twice a day instead of tramodol which I was told actually heightens pain and ibrofen. This has worked for me and severadol 10mg for breakthrough pain throughout the day. Hope this helps xx

in reply to Hobbesgang

Thanks for the info, I hadn't even considered the meds you are taking and going higher up the opiate scale than tramadol, if I'm right that's what it is?

I'm thibking of asking for a swap to naproxen and pregabalin and using the tramadol for breakthrough until I get in a position where I can try the alternative therapies and start to wean off meds. That's the plan but gp might have other ideas ha ha

Hobbesgang profile image
Hobbesgang in reply to

You won't ever be able to live a normal life without meds to help unfortunatly that's the nature of this condition sorry xx

Larke profile image
Larke

Talk to your Pharmacist about Nucynta. It's like Tramadol, but with far fewer side effects. No constipation, for example. It is consider a medium to high pain relief. Stronger than Tramadol but not as strong as Morphine. Currently I am on 200mg 2x a day of Extended Release (ER) and 50mg x2 per day of Instant Release (IR) for breakthrough pain.

I am also taking Cymbalta and Lyrica, but I'd highly recommend anyone considering Cymbalta to NOT take it. It's a hell of a thing to get off of. Just Google cymbalta withdrawals and you'll see how hellish it is.

I'm on Cymbalta for life because I do not want to ever go through the horrible withdrawals I've seen discussed and repeated pretty much everywhere online.

Otherwise, looks like you are on pretty much the same things I am. Different drug names, same diff in some cases. Though I'm not on that much Cymbalta, I only take 60mg per day.

I also want to note that the best thing my doctor told me when we went through trying so many pain relief medications that first year, was to NOT expect to be pain free. Honestly, that's just not a realistic expectation. You will always have pain (until or unless a cure is ever found). What you need to do is find out how much you need to take (of pain medication) to be comfortable, not pain free. Otherwise you'll be setting yourself up to fail and you will always have or see a negative outcome.

May you be free from inner and outer harm,

May you be peaceful and happy,

May you be healthy, and strong,

May you take care of yourself joyfully.

If you like that mantra, use it for yourself: "I AM free from inner and outer harm..."

I say this over and over to myself. Keeping a positive attitude helps so much.

Don't ever give up!

livingwithfibromyalgia.ca

fiona1960 profile image
fiona1960 in reply to Larke

hello i have been diagnosed with fybromyalgia about six months ago, and i am taking from my gp, acupan and paracetamol, and i am having flare ups every day. i am going out of my mind with the pain, which was so bad two days ago and i passed out. my gp hasnt offered for me to see anyone about pain management, and i just feel i need some help. can anyone suggest what i can do please .fiona

in reply to fiona1960

I've never had the problems you have, although, I am very assertive and due to ongoing issues for many years Im lucky to have seen the same GPs regularly.

My advice would be to discuss your pain and issues with your GP, make a diary of how you feel and take notes with you. You could also take an advice leaflet or point your gp to the nhs choices website. I would also ask for referrals to a pain clinic and/or psychotherapy.

I'm sure others may also have advice which is better than mine, I guess it's just a case of going back to your go until you feel relief. You deserve to have your issues treated and to see specialists to help you live your life.

Good luck x

in reply to Larke

Thank you for your reply, I'll have a chat with my GP about what you said, something to think about.

I had horrendous withdrawal from citalopram to go on cymbalta so I never want to switch again. Currently they are doing wonders for my mood and anxiety which is why only now am I able to communicate about my issues.

My pain isn't currently manageable so I can work and do daily tasks with ease. I WANT to be pain free but it doesn't mean I'll get there but I'm willing to try with gp support the popular medications others are mentioning - everyone is different and Id really like to find something really effective and knock off other meds in the process - that's my plan.👍

Thank you to everyone that posted replies here today. you have all made me feel better about this condition! I had no real clue about the medication im taking plus alternatives to consider that others are using. I have received some great tips and things to look at to help me understand the condition plus everyone has been so friendly and open about their experiences.

When I posted I wasn't sure Id even get a response at all and have been overwhelmed at the amount of people genuinely wanting to be helpful.

I'm sure this site is going to become a valuable resource for me throughout my journey.

Thanks again xxx

TheAuthor profile image
TheAuthor

Hi M3cury78

I am very much like you in that I am not pain free despite a great deal of medication for my Fibro and several other medical conditions. I have pasted you a list below of my medications. I want to wish you all the very best of luck

Ken

Alendronic Acid Tablets –

70 mg Tablets. One to be taken weekly

Accrete D3 Tablets –

Calcium / Colecalciferol tablets. One to be taken twice daily

Lansoprazole Tablets –

30mg tablets. One to be taken daily in the morning.

Prednisolone Tablets –

5 mg tablets. 10 mg to be taken daily

Ventolin Inhaler –

100 micrograms evohaler. Two inhalations to be taken as and when required

Atrevent Inhaler –

20 micrograms inhaler. Two inhalations to be taken four times a day

Symbicort Turbohaler –

200/6 inhalation powder. Four inhalations to be taken twice daily

Ranitadine Tablets –

150 mg tablets. One to be taken twice daily

Metoclopramide Tablets –

10 mg tablets. One to be taken three times a day as and when required

Nortripyline Tablets –

25 mg tablets. One to be taken at night

Sumatriptam 50mg Tablets –

One to be taken when needed. No more than 2 tablets in 24 hours

Pregabalin -

75mg tablets. 75mg to be taken in the morning and 150mg to be taken at night.

Co-Codamol Tablets 8mg/500mg -

2 tablets to be taken as, and when necessary. No more than 8 tablets a day.

Citalopram Tablets –

20mg Tablets. One to be taken in the morning.

Hi dan, I've not heard of some of the ones you mention But I'll look into them, thanks for sharing x

Ha ha, tell me about it! I'm hoping to sort that with my GP tomorrow, I'm getting sick of my life revolving around taking pills 👎🏻💩

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