I am currently 17 years old, and my doctor is weary about giving me stronger painkillers, being under 18. I am on a high dose already, but it is to no avail. How can I convince my doctor that I do need further help with my agonising pain?
My age is effecting my treatment. Ple... - Fibromyalgia Acti...
My age is effecting my treatment. Please help.
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XsjcX
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What meds are you on???? Have you researched on the net about drugs and age etc? x
I am on a lot of medication at the moment:
30/500mg Co-codamol x 2 in the morning
50mg Tramadol x 2 in the evening
400mg Ibuprofen taken with above medication
50mg Amitryptaline x 3 at night
Gabapentine (unsure of mg) at night
10mg Propranolol in the morning
My doctor told me that it is not illegal, as such, to give a higher dose but it is severely 'frowned upon' and could cause him some trouble.
• in reply toXsjcX
Hi XsjcX, taking a look at your list of medications it does seem a lot for you to take and as you say with little relief. You have a mix there of strong painkillers, antidepressants, betablockers and neuropathic pain relief. Whilst the doses aren't particularly high and there is room to increase, it would probably be better if you had a review of your medication. A change in medication can make all the difference and really help with your pain relief. I have taken most of the meds you are taking and even with my strong constitution I felt quite spaced out at times and so drowsy all the time. I had my meds changed and felt the improvement almost immediately.
Do you have any other health conditions other than Fibro, what exactly have these meds been prescribed for?! Sometimes when we take a lot of different medications the side effects from taking them all can be almost as bad as the reason we are taking them. It's always best to question why you are taking so many different types of tablets.
Another option might be to ask your Doctor if it would be possible to refer you to a Pain Clinic to help you manage your pain better.
XsjcX• in reply to
I also suffer from hypermobility in my knees. Things like concentration impairment, IBS and memory loss I associate with my FM. I am currently being referred to Pain Clinic but have not yet received an appointment. I really think I should have a long talk with my doctor about ALL my options. Thank you for your help.
Hi XsjcX , I am NOT A DOCTOR, but i do have Fibromyalgia, i have just had a look at the info inside a box of my tramadol and it says ( Adults and Adolescents from the age of 12 ) so that would sugest to me that anybody over the age of 12 can have a full dossage, my tramadol are 50mg and i am taking 2 capsuals 3 times per day However you have not mention what meds you are on at the moment and what dosage you are taking, you might already be on the highest dosage.....
Once again i am not a doctor, i hope you get sorted soon,
All of the best
CHORLEY 
You are on a lot of meds.....do you take 150mg of Amitriptyline at night??? If so that is mega high I believe.], even though I;m not a dr either ( its just what I have learnt through talks from pain consultants and my own research) You are getting into the areas of it becoming an anti depressant rather than it working for pain....as that is what the drug is registered for.
Are you still mobile and able to walk,do yoga, swim ? Just wondering with some physical therapy you might be able to decrease your pain and improve your quality of life...just a suggestion as it s proven that it works. xx
Since I started taking Gabapentin (last week) I decreased my Amitryptaline from 200mg a night, so yes, I was/am taking a very high dose. It is used as a nerve-number as well as an anti-depressant and was suggested to me, funnily enough, both by my psychiatrist and doctor at the same time.
I rarely walk without my crutch and cannot do yoga/swimming or any other vigorous type of exercise. I did try physio but was pushed too much and quit, but that was with a guy who was untrained in FM. I am being referred to phsyio with people trained in FM, but have not yet received my appointment.
I am having a lot of trouble getting to college, also, especially with the cold weather. I have a meeting in a few days at college and am worrying that they are about to kick me out, so better painkiller seem the only way out of my mess at the moment.
I honestly think a review of your medications is needed XsjcX as soon as you can manage to see your Doctor. Clearly the tablets you are taking aren't helping you manage or control your pain. Is it possible to see another GP at your practice, sometimes at Health Centres it's possible to see someone else. Another Doctor might have another view on the medications you should take.
Also another thing to bear in mind is that when the doses of your medications are changed sometimes it's better to slowly reduce the doses instead of introducing a new medication and just decreasing the former immediately. Amitriptyline is an antidepressant and as such should be reduced gradually as even stopping a couple of tablets can cause increased side effects and more pain, headaches etc.
The advice given here so far is good. I really would suggest you talk to your doctor about a medication review and, if they are not confident in dealing with this, push to get that referall to pain management asap.
Research does not support the use of Amitriptyline at high doses or long term for Fibro.
The use of strong opioids for Fibro is also not recommended. So although you may be able to take a slightly higher daily dose of co-codamol (the adult maximum is the dose you are taking, but 3-4 times a day not once) or Tramadol (this website has useful information on Tramadol dosing for both adults and children: drugs.com/dosage/tramadol.h... then there are not stronger analgesics than these recommended for Fibro.
I assume the Ibuprofen is for inflammation caused by the hypermobility as it isn't a treatment for Fibro?
I'm also assuming that the Propranolol has been prescribed for migraine, the physical symptoms of anxiety, irregular heartbeat or something else as this isn't a treatment for Fibro itself either?
Gabapentin is a very similar med to Pregabalin, which is known to not work for some people with Fibro. So you could conclude that Gabapentin may not work at all for some people with Fibro.
All in all, it looks like you may need to look into alternative medications and non-medication treatments if your current meds are not working, rather than just bumping the doses up.
Yes, Ibuprofen is used for the inflammation of my knees, and back. I'm taking the Propranolol for palpatations and anxiety. It seems that Gabapentin is not working at all for me. I do agree that I need a new type of medication instead of increasing the dose. Thank you very much for your help.
Hi LindseyMid ... i'd just like to mention that what you are saying about the meds that are not for Fibro, i think actually are? As far as the information i have seen, anxiety, irregular heartbeat, migraine, inflammation... are all aspects of Fibro.... re.. part of Fibro.
Please explain further what you mean,
Thanks
Fibro is not inflammatory.
And whilst migraine, palpitations, etc can all be symptoms of Fibro, it doesn't mean that all the treatments for these are treatments for Fibro itself.
Not everyone with Fibro will get these symptoms, for a start.
And treatments for comorbid or subsidary symptoms are not necessarily going to treat Fibro - IBS is a common symptom with Fibro, but if you are prescribed pepperment capsules for your IBS (an evidence based treatment for IBS), that does not mean that peppermint capsules are a treatment for Fibro.
"Fibro itself" you say. Please explain what you mean my this?? As I understand it... Fibromyalgia is a complex illness with many symptoms, not all people have the same. What does "Fibro itself" mean?
wouldn't these treatment's be part of treating Fibro? Being that what is being treated is part of Fibro?
I do not understand you.
Also, 'inflammation' comes from many many things... and I do not agree that it is not part of Fibro. Just because many doc's say that it isnt, doesnt mean that it's not. There are so many things that Doc's get wrong about this illness, as it is still being explored. Why would you just wipe it? Is there no room here for speculation? I mean, seeing that you are not a Doctor?
I'm sorry, but the way you are so adamant about the information your giving out, is a bit disturbing to me. Many illnesses are linked to Fibro too.. they overlap so much. How on earth can you say that inflammation is not part of Fibro? what about myfascial pain? this can be linked yes? although it is an illness too, it is linked, therefore part of fibro? Too technical i think.
Speak to your college and explain your condition. It should not stop your education. I have suffered since I was 11 (Now 20) and I managed to get on a foundation year at University of Birmingham and am now on a degree in chemistry. If you want to go to uni you can get a lot of support through disability advisors, and the Disabled Students Allowance. Keep going!
My college knows full well about my condition, but since I've been off for 3 weeks it's getting to be a concern with both myself and my tutors, dispite the piles of work I'm doing at home, which some of tutors don't realise I'm doing, which is annoying. I am currently getting the college bursary, and apparently I cannot claim that as well as DSA. Thank you for your help.
Hello,
I'm 22 and currently at university & went through the same thing last year. They were able to help me apply for Disabled Students Allowance (DLA), here is the link for more information -
direct.gov.uk/en/DisabledPe...
The university did an evaluation and were able to suggest somethings to try to help you at college. I got a Dictaphone to record my lectures, an eletronic pen which records my lecture as I take short notes, I got a laptop stand, ergonomic mouse and keyboard. They also helped to set up some things to help me during exams, like extra time and the use of a computer.
Hope your having a good day! x
You could try swopping from Gabapentine to Pregabalin....it's a newer drug and the consultant I have seen says it could work even if Gabapentin doesn't ??
You could change the co-codamol to paracetamol due to the opiate base of it. Like Lindsay says, opiate based drugs do not work for Fibro sufferers as basically the opiod receptors in the brain do not respond. There is research to suggest that canaboid receptors in our brains may respond however there are no cannabis based drugs out there!!! That is why MS patients and people suffering from nerve pain/damage smoke it. However it is obviously illegal and I would not do it and do not suggest that you do. You can't really take morphine either for Fibro on it's own as it will not work..
You need a second opinion for sure hun.
Remind college that you fall under the Equality Act and should treat you with respect if you consider yourself disabled.
All the best.....try some mindful meditation....relax and de stress xxx
Thank you for this. Paracetamol doesn't touch me at all, so that's not on the cards. I would like to see how morphine would work on me but obviously this is not an option because of my age, and morphine isn't really a good thing to get into, I think, long term due to drowsiness etc.
Just to clarify - opioid based drugs do work to some extent in people with Fibro. It's just that they cannot work as well as they would normally in someone without Fibro. hence why people with Fibro can be taking morphine or fentanyl and still be in pain.
In your position i would be pushing for a quick date on your referral to the pain management team. GPs are rarely able to look at the condition holistically where a pain clinic will. xx
I have added some tags to your blog post (I realise that this is a new concept for many members) to make it easier for people with similar issues to find this post. Hope that's okay!
Do you mean this question or my blog about my Facebook page? Either way It will help others so thank you!
Yes, sorry, I meant this question!
im 45 now and still have problems with this do what i did just once lose your temper with your consultant
Haha it seems that's my only option.I'm usually too quiet and don't get to say what I want.
Friend of mine told her consultant she was going to jump off a bridge leaving a note citing the incompetence of his team as her reason for no longer being able to carry on. Needless to say her consultant took her onto his own caseload and she's getting a lot of help.
Over-dramatic? Maybe, but it got the result.
Hi, I'm 27 but was around your age when my symtoms became more prevalent and started causing poblems. I think Rachel has given excellent advice re the pregabilin over gabapentin. I had to push for the pre gabilin as it is more expensive.
I too suffer from hyper mobility. If you get the right physio like I have who knows about FM they do give you stretching exercises t get you going but mine manipulates my muscles that have become tight from the tension caused by HMS and fibro. Some of my muscles have become so hard that the physio said they feel like bones and she has seen this in many HMS and fibro patients
I had amitryptiline and found it made me rather weepy. I have had only good results from the pre gabillin which definitely helps you sleep as well as reducing some of the pain/hypersensitivity
Again this is opinion found through trial and error and not everyone is the same. If your parents help and are involved in you care ask them to go with you, the GPs are often more receptive to them - I still take my mum and she backs me up and helps me push my point and request
Good luck x x x
Hi,
I have tried the majority of medication you are on and more, but my body either rejects them or they do not touch my pain. I have suffered for 20 years and tried and tested many things. I now only take naproxen morning and night and dosulepin at night to help me sleep, these don't really do much but occasionally take the edge off.
I would recommend, just like the others, pushing for alternative treatments, I have found hydrotherapy, accupuncture and other physio treatments give short term relief. Heat treatment sometimes helps too.
Unfortunately it's about finding coping mechanisms that work for you, not easy I know, it took me about 15 years to accept the condition and re-adjust my life to suit me and so I could actually start living it again. I'm a single mum with a 6 year old, I work full time and I'm in the final year of a BA hons Business degree with other conditions on top of the fibros, yes I'm in pain and exhausted but please don't let this define you, just give yourself time to find what works for you and keep trying things till you're happy.
Don't give up on college, I missed 4 months in total of my first year, but I worked hard on my good days to get through. You can do it, you just need to think positive
Good luck with it all
EmaB, you sound inspirational. It's great to hear you are doing so much in your life, when suffering too.
I am a great believer that positive thinking plays a massive part in recovery/maintenance and pacing. I have found Yoga and meditation very calming and educational!!!
Coming to terms with the illness is one of the hardest things to do, especially when it is not under control. As soon as there is acceptance I feel that we can live with what we have and progress.
It takes everyone different amounts of time to get to this place and I am not sure I am there yet on some days, however on my good days I am miss positivity!!!!!
xx
maybe it would be a good idea to take one or two of the meds out and then put the other ones up they might be happier doing that as you wont be taking such a cocktail. Thats the only thing i can think of sorry 
Yes, I'm starting to believe that the amount of medication I'm taking is doing more bad than good, and a 'cocktail' decribes it perfectly! Thank you for replying. xx
i am on alot of meds myself and i have had to try alot of meds to get to the right medication its all about trial and error finding out what works against the pain and other symptoms without causing too many side effects otherwise you end up with a breakfast bowl of meds!
The other problem is of course what what works with some people medication wise doesnt always work with someone else.. eg some people swear by amitripaline but it turned me into a zombie.. i find pregablin works well but other people find it doesnt help long term or doesnt work with enough of the symptoms..
Just juggle with what you can until you find what works for you xx
XsjcX
Agree you do seem to be on a lot, I have taken all that you are on, but not at the same time and have also discovered that they all have side effects which can make you worse. One of the side effects of Co-codamol is headaches. Others give you brain fog and dizzyness.
Not at all medically trained but did once date a chemist, he said that doctors are less worried about side effects in old people as they don't have long to live but do have to be very concerned with young people. Another friend who work for a health research company said that there is little or no research on cocktails of drugs.
You need to see an expert sooner rather than later.
Jacqueline
know you are on a lot of meds but have you tried boswellia for inflamation they are herbal the only down side with them is it takes up to 3 months 2 start working i have been on them for years and think they are doing me good i have fm but also have a sepatated shoulder and since taking boswellia the pain has eased a lot as i said they are herbal so you got nothing too losse by taking them xx i have also had the condition for over 20 years when i was 30 they told me my bones and muscles were that of a 80 year old i have tryed all the things mentined above but was lucky to have a good doctor who put me on the right path i stated on 10 mg amatrip but in th last few years have had too up them am now on 70mg each night but when i am ok try to cut it down i just take each day as it comes but do try mind over matter hope u will be sorted soon xx
I thought Gabapentin wasnt working for me until I came off it ! Boy was the pain worse. I went back on it in larger doses ( I take 1200 mg 3xday and have a lot of relief with this dosage.) Everyone is different and we all seem to be on various chemical cocktails, it really is trial and error isnt it. You have nothing to lose by sifting through all this info and taking from it anything that sounds reasonable to you. If it doesnt work try again! Hope you find some relief soon but remember there are no magic pills for fibro and life doesnt have to be painfree to be enjoyed. love to you all xx
That is doing more damage to your body, pharma meds never help, they mask the problem, have you looked into other ways of helping the pain?? No wonder the doc does not want you to have more, I would not want you to have more either, there are many other ways, be kind to you. It is scary that someone so young is on so much already... I am sorry that you are in so much pain, have you looked at something called Ormus??
Hello XsjcX,
Well you have created an uproar here! So many kind people. It's nice so many have responded and tried to help you. I hope you find something amongst it all, but I too think you are on a strange cocktail. Maybe an imbalance of them is creating more problems than they are solving, I don't know. But it is worth looking into as they are not doing what they need to do for you.
Regarding your doctor : I have found that sitting down and writing what you want to say to your doctor has good results. Either I refer to it or he reads it. He prefers it because I waffle on and forget half of the things I wanted or needed to say. I also take someone with me to either back me up or add information I have forgotten to say and they also help me remember what it is the doctor said! I find my doctor pays more attention when there is someone else there too. You are entitled to ask for a second opinion, and my doctor was pleased to arrange this - they only confirmed what he said, but it reassured me. Always remind him of what you are on already as they do forget!
I cannot take anti-inflamatory medication as it starts up my reflux, but I wish I could. With your hyper-mobility causing inflamation, I am not surprised you take something for this - I don't know why all the upset before?
Regarding your college, they need to take into account the type of medication you are taking as you are disabled and they should notify the examining board so that allowances can be made for exams - time allowances. It takes a while to take on board the fact that if you cannot do the same as the majority of people, you are disabled. I was disabled by having epilepsy and entitled to more time, my daughter has dyslexia and has all sorts of help from college and university - and should have got help from school!
Also you could be able to claim Disabled Living Allowance [DLA] and your parents the carers allowance. I contacted JobCentrePlus and they had a division called Access to Work - I have no idea whether they could help you but it may be worth contacting them about getting to and from college.
Also contact Citizens Advice Bureau to help you with all of the forms and advice on what you are entitled to, money or other. I am surprised the Students Union have not offered you support and advice, have you contacted them? Maybe there is someone who lives near you who could give you a lift to and from college. I know its embarrassing asking and going with strangers, but look on them as potential new friends and at least college knows them!
I have run out of ideas for you except do try things like acupuncture [you cannot feel the needles I promise], TENs machine, a Healer and one I really like is Hydro Therapy - just don't go mad or you will get told off! I cannot walk very far but felt I could walk miles in that lovely soft, warm, water!
Good luck, get that second opinion or a pain management clinic soon.
Soft hugs
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