Hi all
I'm on here trying to help my 27yr old son who has chronic fibromyalgia, he is on 8x 30/500mg Co-codamol a day but struggles terrible of a night with sleep and severe pain, any help would be so grateful.
Help with Fibromyalgia: Hi all I'm on... - Fibromyalgia Acti...
Help with Fibromyalgia
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Fairytale50
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Hiya Fairytale,
Welcome to the community. Wow I hope your son realises how lucky he is to have such a caring mum! As for his fibromyalgia just 8 co-codamols a day is not the type of medications most of us are prescribed here. Take me for example I take Pregabalin, Naproxen, Cetrizine, Lansoprazole, Co-codamol, Duloxetine, Paracetamol and Amitryptyline. I'm not sure why his doctor hasn't at least prescribed Amitryptyline! This helps me with my pain at night and ensures I do get some sleep. I think you and your son need to revisit his doctor to discuss his medication. I do hope that he gets prescribed some more medication to help with his pain. We all have our ways to help make living with fibro a bit more easier. I love the comfort of heat myself so have many electric heatpads, an infra red lamp and a lot of soft fleece blankets. I also love my weighted blanket which is like marmite you either love one or hate it. Good luck and do let us know how you get on.
🤗😊
Hi hunThankyou for your wonderful reply, he's had every tablet nothing is working only co codamol which chills him doesn't help the pain, I've read about the weighted blankets, infa red lamp is interesting I'll try that thankyou so much x
• in reply toFairytale50
Hi . I'm so sorry your son is suffering so much. I'm on a cocktail of medication including morphine and unfortunately not a lot helps completely.. I can vouch for weighted blankets . I have a weighted cool blanket and it has changed my sleep totally . I got mine on line at kuddly.com. they have lots of different ones and have really good offers at the minute. I also went on a pain management course for 9 weeks 7 years ago and learnt all about mindfulness and meditation . It's the best and only thing that helps me . Even if it is for just an hour of relaxing it's a bit of respite .
I think he definitely needs a change of medication as in antiinflamatory ones .
Good luck with his or your journey xx
You don't need to buy the lamp you can buy the bulbs too. Just check the fitting. As for our medications nothing sadly stops the pain it just takes the edge off. It takes time to accept this. I forgot to say I find CBD helps me too it relaxes me which helps relax my muscles. I use CBD for my anxiety and find it helps. 🤗😊
I really dont think co codamol will be helping him at all. It may just make him more lethargic during the day and could be causing even worse pain. I believe fibromyalgia has a lot to do with the gut and around 60% of those with fibromyalgia will have irritable bowel syndrome which in turn can cause pain anywhere in the gut that goes from your mouth and even nose all the way down to your anus.
Co codamol causes bowel problems like constipation and even a sluggish bowel so I would try your son on some hypnotherapy and also buy him a small tens machine which you can by for around £15 from wish.com they act like an electronic acupuncture but they certainly help with my pain especially when going to bed and helps me drift off to sleep.
If I have it on a strong setting with just two pads and tape the other two up then it concentrates the pain from the tens machine in one area that my mind tells me I should be expecting pain from because I initiated it so then I seem to forget about the fibromyalgia pain in other areas by focusing on the tens machine pain and I fall asleep quickly. But seriously get him off co codamol as they can also become addictive. Go to your GP and insist your son is seen by a pain clinic including an advanced physiotherapist for a definate diagnosis of fibromyalgia and then they should use their pain clinic pharmacist for more suitable pain medication maybe gabapentin or pregabalin. Lastly try to keep your sons chin up. I sound very much like what he's going through right now and worrying stressing over the pain makes it worse and so does the anxiety that comes with it. Just give him a gently hug every day and say you cant know what he's going through but millions of people worldwide know exactly how he's feeling and there is hope out there and treatments that will eventually give him some comfort.
There are quite a few who say they are cured of fibro event hough the likes of the NHS say its incurable but I tend to believe the blogs some people have made saying they were at the end of their tether and just wanted to die but then something hit them about causing heartache for others if they were dead and it made them try to heal themselves with food and lifestyle changes and they did it. Now if they were trying to sell me something or make commission then I wouldn't of believed a word of it but no they just wanted to shout from the rooftops at their own expense that they beat fibromyalgia.
Finally no matter how frightening fibro feels at times it does not do harm to your body
Caffeine lactose dairy and processed foods are other things to cut out or right down on..and of course alcohol which I didn't drink much anyway but that certainly made my pain through the roof after just one small glass
Aaaah Lee thankyou for that fabulous reply, your so right on what you say, he's been on co codamol now for 4yrs and is addicted to the point he goes into a distressed meltdown if his meds aren't done on time, he's so ill with severe withdrawal of sickness and bowels it's awful to see. His mental health is very low too. He's had all those tablets but nothing has helped, he's seeing a physio at the moment he said how bad his body is. The only thing that helps is hot baths, he has 4/5 a day. I hadn't thought of hypnotherapy do you think that would help, what sort of hypnotherapy would I ask for? I think the food aspect affects him too, he doesn't drink at all. I too have just been diagnosed with fibromyalgia but I'm obviously older it's so not fair on a young man, my trouble is I enjoy a glass of wine.
I find hot baths with Epsom salts give me some relief I also use red light therapy which helps after a few days of the treatment and 12 hour voltarol gel which I lather on the painful areas and wait for the skin to absorb
One thing I can think of that nobody else has mentioned Is Vitamin deficiencies. It's worth asking for blood tests. If he doesn't get out of the house he's very likely short of VitaminD and will likely be getting short of Calcium.
If he lays about he will also be in danger of muscle wastage over time. Exercise is important in Fibro.
Look up The Spoon Theory on the Net. It will help you and him understand how the energy gets depleted over the day and why it is important to conserve what you have.
Cheers, Midori
Thanks for your advice very helpful and your correct about the vitamin mineral deficiencies and Excercise , thank you.
Fibromyalgia is different for every person with many similarities. Your glass of wine might actually be helping you deal with your fibromyalgia and the effects your sons is having on you. Make no mistake your fibromyalgia may of been caused by the stress and worry of your sons fibromyalgia. I dont want you to think that your son is now the reason for your fibromyalgia but the fact is it may be a big contributor.
You clearly and obviously love and worry so much about your son and want him to get better and I have every hope that he will improve once he has acceptance that this invisible disease is what it is and is not harming his body but maybe harming his mental health. I believe once you accept something like fibromyalgia or anxiety and accept that the pain and worry it causes does not kill you or cause damage to your body then the sooner it will calm down or symptoms will disappear.
What I am saying is if you've ever had anxiety or a panic attack you should just think oh this is anxiety it caused no harm last time I had it and I didn't die so exactly the same will happen this time so I'm not going to waste my time worrying about it and concentrate on something else and let the anxiety do what it has to do in the background as in cognitive behavioural therapy. Focus on something else at the same time as the anxiety and eventually the anxiety will go.
While I'm writing this I am in terrible pain in my abdomen (tummy) and chest and my eyes are very sore but I am concentrating on this reply to you so apart from the sore blurry eyes I am not noticing the pain in my tummy or chest unless I really think about it. When I have finished this reply I will feel a little better in that I have completed something I needed to do and also perhaps helped someone else at the same time. The only problem is no I feel I am rambling on and worry it may not make sense.
The hynotherapy is called gut directed hynotherapy but I suppose it all depends on if your son or you have ibs or symptoms similar to ibs. I know you say your son maybe constipated and this could be ibs caused by fibromyalgia or Co codamol as constipation is a common side effect. The problem is I worry that fibromyalgia maybe caused or made worse by bowel imbalances and gut flora caused by medications and irritants such as lactose, gluten etc and maybe even things like fatty liver.
If you manage your gut I believe it could help with pain as I believe your gut is responsible for how your nervous system works and that in turn is responsible for your state of mental health. I also believe its a vicious circle so you need to treat you gut and your mind at the same time to give that vicious circle a break.
I dont know where you live but try looking up hypnotherapists near you that state they can treat ibs. Dont just look for a hypnotherapist that say they can treat everything. They must specifically say ibs. Every hypnotherapist will treat anxiety.
The problem with hynotherapy will only work if you want it to and if you can concentrate on the hynotherapist words. If you keep overthinking and drifting off topic or cant concentrate then you need to learn to relax. The hypnotherapist would be able to help with that but it might take quite a few sessions to do that and could be quite costly.
So you or your son could learn to relax first by concentrating on something so interesting that you block out everything else. Something like locking yourself in a bedroom with headphones on with your favourite relaxing music on for a few hours. Just make sure you let everyone know you don't want to be disturbed unless its an absolute emergency. Or you could drive somewhere peaceful lock your doors and again listen to peaceful music with headphones on so as not to be disturbed. Oh and turn your phone off or on mute other than if youre using it for the music.
Once you manage to focus on one thing for an hour at least then you will be ready for hypnotherapy.
Some hypnotherapists offer something called pure hypnotherapy which is supposed to be more intense so the condition is less likely to come back and some offer a guarantee that say if after their usually treatment of so many sessions that you are not significantly better or even cured then they will continue free of charge until you are.
The best thing to do is look some hypnotherapists up near you and look at their websites or call them up if they don't have a website. By choosing a few you should ring them up anyway and ask them advice about how successful they have been in treating ibs in other patients and then pick who you believe is best
Lee what an amazing reply, and I feel humble as your in pain. Your absolutely spot on, I worry myself sick and I always have an underlying fear that one day I'll go round and find him due to suicide. He has a wonderful Councillor who he's been going too fir 9yrs so that helps. I have another son too and we are very bonded together their wonderful men. I was widowed 12yrs ago and I think that was something to do with his trigger, he has irlens syndrome which affects the nervous system too. I lost my wonderful wonderful mum 5 yrs ago and that trauma triggered my fibromyalgia, and worsened my son's. We both have IBS my body shut down after I lost my mum. My son suffers terrible anxiety I had him on the phone earlier in a panic over his medication, he's well aware he's addicted it's so upsetting to see xx
I cant imagine what you or he is going through. Its just not fair but one thing you can be sure of is that millions of people have fibromyalgia and I'm sure I speak for most of them when I say we hope you get at least some relief soon and that that will have a knock on effect and give you two even more relief. I dont know you and while I'm not particularly religious I sort of pray that you both get some relief very soon and I really mean that. Hearing of success no matter how little I'm sure gives us all some much needed relief.
Keep your chin up and dont be afraid to come on here and vent your frustrations, lonelyness, sadness & happiness and ask for any advice from any of us as I find there is always someone on here thats waiting to help. I dont often find time to reply because I know I could write a book and sometimes I have written long replies only for my screen to lock up and I lose everything I've typed and it stresses me out so much.
I suppose if you want to talk again anytime then just come back and reply to this message so it emails me as I dont always come on here but I do when I get a reply email.
Best wishes to you and your son. Tell him people understand and are with him and to never let go of hope because one day soon things will improve as when you're down the only way is up.
Several years ago my GP sent me to see a rheumatologist and he put me on Fentanyl patches which helped a lot I am on a higher dose now, he also said that Tramadol is no good for fybro this is what I have been told. I know lots of Drs have their own way of treating fybro . I also take Amitriptyline at night and my sleep pattern is not good. I try very hard to not get stressed when I am up 2hrs after going to bed. I hope that your son will get the help he needs very soon
Hi Anne Thankyou for your reply bless you, I've written those patches down, he's had everything else except morphine but they won't give him that they said that's only for cancer patients. My son's in such a bad way he even struggles to leave his house
Hi Ajay575I am on 37.5 right now I try very hard to try and keep the dosage as low as i can but thinking now I need to higher it, but I had Omnicrom over Christmas and that has messed the fybro big time so trying to wait and see if things settle down over the next couple of weeks.
take care
I find since going on morphine I sleep great and it's the only thing that takes edge off pain for me and I've tried everything hope this helps x
Hi Millie I asked his doctor but he said no it's only for cancer patients
What a load of rubbish ask if he can be referred to pain management hope he gets some helpxx
Just to give you another point of view an awful lot of us don't take anything for fibro. I don't take anything for fibro, this is often because fibro patients don't respond to opiods and cannabinoids. The current NICE guidance is to move away from drug treatments and instead explore exercise and talking therapies. I use exercise. I'm a life long insomniac so do understand, exercise can help with sleep too. He may encounter resistance with his GP if he tries to get more meds. I am prescribed Amitriptyline for chronic migraines and this gives me a bit of help with falling asleep, unfortunately I don't stay asleep for long.
Hi Cat00. If you don’t mind a question on your meds can you tell me what dose of Amitriptyline your doc prescribed for your chronic migraine. I also suffer from these and my GP has prescribed Amitriptyline for me recently I haven’t noticed any improvements though.
Thanks. Purple Meyer.
I'm currently moving from 90mg up to 150mg because I've had a really bad patch of continuous migraine for 2 months. I personally don't find Amitriptyline that helpful for migraine I take it bc I don't sleep without it. Even with it I only sleep for bursts of an hour and a half and my neurologist is worried about the effect it could have on my long term health.
Thanks for that, my gp has put me on 50 mg initially “ to see how I go”.
Sorry, a bit foggy this afternoon. Is the neurologist worried about long term health taking the amitriptolyn or you not being able to sleep.
I always take it at 8.30pm so I'm not too groggy when I wake up in the morning, although that particular side effect wears off in time.
My neurologist is more worried about the long term effect of not me not sleeping. There are considerations for the long term use of Amitrityline but she thinks the benefits out way the harm.
Thanks, it’s good to hear someone else’s perspective on sleep as my gp doesn’t seem at all concerned.
To be honest all the doctors I've met have said there's nothing they can do so I'm not sure it is being taken particularly seriously, its just the reason my neurologist gives for me staying on Amitriptyline when I query the long term side effects of it.
I did go to a sleep clinic but really if you don't have sleep apnea, which I don't, they said there was nothing they could do either. I haven't even been offered insomnia CBT that I have read exists now, trouble is if you have quite well established mental health problems they don't recommend the CBT so maybe thats why I may not have been offered it. I would say insomnia has destroyed my life more than chronic migraines or fibromyalgia but there does appear to be no solution, I figure I'm going to get dementia whatever happens now!
I am also one of those who can not take meds. Though over the 40years I have had fibro I have tried a few with no success.
People say you can't be in pain or don't have fibro etc. But I am in pain every day. I am also reliant on a wheelchair due to my fibro. But I was just as bad when trying to take a cocktail of meds. Actually I was worse. So it was a no brainer for me. I had to stop all meds.
One thing I have found sitting down or laying in bed all day makes everything a 100 times more painful. Movement even small amounts is a must for me.
Inactivity does have a big knock on a effect to loads of other problems for me. Pain, boredom, unable to sleep.
It is very difficult to try and focus on anything but pain at times. But distraction therapy plays a big part in my daily life. Apart from trying to keep the body active Its a must to keep my brain active too. For me distraction doing things I like even its only doing things from a sitting position does stop me thinking about my pain. If only for a short while it gives me some respite xx
I think you are spot on there with everything you say and one thing I've learnt is not to sit for long periods or stay in bed as that only adds to the pain ect. I too cannot tolerate any strong medication which actually has worsened since having pneumonia and the onset of fibromyalgia with very drastic side effects. I try to go for a walk most days all be it very painful and I soon get extremely tired my legs and groins feel like they are going to let me down and are very shakey and off ballance but I walk slowly with a stick sometimes a crutch. I have osteopenia osteoarthritis in my thoracic spine and neck but I'm determined I'm not going to let it get to me and a believer as was my mother who was bent in half more or less with osteoporosis that I'm not going to lose it. If you don't use it you do lose it so even if it's just very gentle exercise its better than non at all.. plus my change of diet has dramatically changed things for me and do believe if I hadn't have gone about changing it for myself I would probably be bedridden by now.
Has he been to the pain clinic yet?
Yes but she told him to take paracetamol 🤨
That's a bit crap. Pain clinics are often disappointing, it took years of suffering before I got sent to a pain clinic and in the end it was my midwife that referred me.
I think it helps to remember that pain clinics exist to help people with incurable pain, so to expect much pain relief from them would be expecting too much. They should, however, give you a better understanding of how to use the limited amount of pain meds available to you and to give you access to courses in things like mindfullness to help you cope with the psychological effects of living chronic pain.
Hi Ajay We've done all that nothings working its just getting worse
Have you tried magnesium malate capsule , MSM or NAC ?
Don't ever try morphin please I was on it , it never helped pain I lost my appite over time and then I kept stop breathing in night, ambulance was called in the end and they went mad saying morphine is not the answer to long term pain the doctor should never of gave you this, it is an awful condition bless him try pregab or gabap and paracetamol together codamol constipate you terribly xxx
Ask for an infusion at the pain clinic if he's under them lots of fibromyalgia patients have it xx
Have you tried massage for the muscles and acupuncture gentle stretches can help too
My nephew has fibromyalgia he started with it at 18 he was in a lot of pain his doctor prescribed tramadol which annoyed me because he was so young its a life long condition and tramadol is a morphine derivative . Its like, give him a chance before doping him up on high strength painkillers you have to consider liver and kidneys when dishing out pills these long term solutions are not good . Anyway he chose to go down that route but was depressed as he had creativity and ambition but was hindered by lack of sleep and mobility. After 3 years seeing how I was doing on fibro he asked how come you're more active and lost weight. He was shocked when I said I didn't use painkillers any more and stopped pregabalin and used raw veg nutribullet mixes as a pain killer and good energy foods like nuts avocado homemade slaw all organic where possible, it was a game changer, not as easy as taking a pill and more costly but it is a life long condition. Young ones if not active will be awake at night and fresh vegetables causes melatonin to kick in (produced by body to help sleep) now there are tablets that help people sleep but again there are side effects with all pills . As your son is young I would at least consider a dietary route before pill route for quality of life and longevity. This is only my opinion I have tried both and pills did not improve my life any where near to what the food change did. My nephew does a balance of both because it's hard to maintain healthy eating when you are young and like pizza and burgers which is normal but the use of raw juices has got him back to university at least and he knows when to reign in the junk food when pain increases. Doctors are well trained but they are not Gods and it is our bodies that deal with the consequences of these decisions not theirs 😁
Has he tried amitriptyline, duloxetine, pregabalin, gabapentine? Stuff for the nervous system more so… as it hits fibro better.
Pain killers are a bit of a nightmare as the only dosage is up.
Have you tried diazepam?
I’m on a whole host of medications for fibro and a whole host of other conditions. I’m on pregabalin for the nervous system, morphine for pain, diazepam to relax the muscles, baclofen for spasms, I also take magnesium.
Has he been checked for hypermobility too?? I was diagnosed first with fibromyalgia- well chronic widespread pain syndrome- same thing, but being hypermobile causes a lot more damage, worth looking in to, it can cause IBS, chronic fatigue and pain, subluxing/dislocations, bendy joints are a nightmare!!
I am on the same and have just been prescribed "Mirtazapine" 15mg to help me sleep. It works but leaves me a bit groggy the next day. I've tried everything else from Gabapentin to Tramadol to Duloxetine and Amitriptyline but nothing really works very well. I've tried coming off co-codamol several times but always have to go back to deal with the pain, doctors are always trying to get people off opiates but they seem to be the only thing that can help take the edge off.
Dear fairytale, your son is so lucky to have you…. I have struggled with fibro for ten years but now I merely get relapses I’m off of the pain meds apart from one gabapentin too… the answer for me lay in my diet…. I follow a vegetarian diet wheat, dairy and caffeine free… I have strengthened my body with gentle yoga (YouTube) … I get as much sleep as I can it is vital…I have gone from being unable to walk ten steps to managing a mile recently …. I have hot baths with magnesium salts in and take coq10, b12, vitamins d magnesium and calcium and zinc… I am over the moon and know I need to share this …. Please change his diet… the other thing I was told years ago when I first developed M.E was that these things run at there worst for a 3 year cycle my m.e did then my fibro did then they settled into being part of my life… I’ve had counselling and learnt to “accept” my condition not fight it… this gave me back control… there is nothing worse than seeing our children in pain and not being able to help and there is no miracle cure but you have us all here… I wish you all the best on this journey never give up hope xxx
Aaaah Daisie, thankyou for your beautiful reply. His diet is bad and his energy is non existant. He is absolutely distressed being on the co codamol as he is now addicted, he desperately is trying to wean himself off the meds but the withdrawal and mental health side are awful and he is struggling xxx
• in reply toFairytale50
Hello! "His diet is bad and his energy is non existant." This is where to start. His diet is inflammatory. When your son understands that what he's eating and drinking is causing the inflammation in his body, he'll be more likey to change his diet.
He should try the Ketogenic diet. If he's used to eating sugar and refined carbohydrates then it (probably) won't be an easy transition; but it is simple. Feel free to message me if you have any questions.
From all the replies, you can see that there is no one size fits all answer. It is a case of trying lots of combinations to see what at least eases things.
Personally I find it helpful to feel I still have some control to make choices. I try to eat fairly healthy - most of my meals are made from scratch but food and drink are one of my pleasures in life so I haven’t eliminated anything completely and still have an odd glass of wine or two. I do Pilates, practice mindfulness, take vitamins, set myself step targets and try to practice some regular self care.
Having to give up work had a big impact on me, so I try to look for ways to feel “useful” however small, which occupy and distract me as well as being good for my mental health.
But equally I accept that sometimes I just need to cut myself some slack, so I rest when needed, take meds and snuggle under blankets with a heat pack and probably the cat.
Hoping that some of the tips from people help you and your son x
How long has he had it? X
Hi Steve it's been escalating for the last 9yrs but he had problems as a baby x
I weaned myself off painkillers and intend to drop my last gabapentin soon too…. It’s definitely worth it …. I forgot to mention I take turmeric every day to reduce inflammation… and to help relax and sleep I drink valerian tea before bed it’s been a game changer…. If you can just get him off white bread to begin with Warburtons gluten free is the closest tasting to main stream bread there rolls are soft my kids like them… get brave try cooking a bolognese with lentils I’ve actually fooled meat eaters with that one! And make sure he’s drinking loads water ideally get rid of sugary pop if you can… all the best x
so sorry to hear of someone so young with this condition.I am recently diagnosed and have been prescribed amitriptyline. This is an antidepressant and I was reluctant to take it as I dont feel low but I have been helped to understand that this drug is used to regulate the pain messages the brain gets. I have taken it for 10 days now and just starting to see a bit of improvement. Nothing you take comes without risks and side effects and I guess you have to balance this. But the lack of sleep due to pain I do completely understand - it affects you hugely in every way. So I guess what Im saying is keep talking to your GP- the NICE guidance now recommends tricyclic antidepressants over pain meds for treatment so perhaps have a chat around that and see how you go.
all the very best
As Flower face says, a pain management course could help your son a lot, as the lack of correct medication and the pain is probably stressing him out, which makes fibro worse. As others have said, I don't see why on earth his doctor hasn't prescribed amitriptyline at night at the very least. I have been on it since 2010 and my doctor gave it to me right away. He said good sleep was key to managing the symptoms. Also keeping warm is important. I have a heated cape, throw and cushion. Good luck and gentle hugs as we say on here!
Has he tried Nefopam yet? I think it may be an expensive one and not one that doctors are too fond of describing. It helped me, it is not an opioid and works by disrupting pain signals to the brain. Can space you out a bit at the beginning, but tha goes away after a week or two.
I recommend epsom salt baths before bed, melatonin at night to help with sleep (melatonin has many other useful helpful effects you should read up on), and CBD oil (a good high strength from the likes of Original alternative or some other decent seller)
Good luck!
I know exactly what you mean, been there. The only thing that helped me was seeing a dietician. Cant believe the difference.
Hi, might be worth you and your son having a look at project twenty21. It’s a pilot which involves prescribing medical cannabis for chronic pain sufferers, including fibromyalgia. I’ve been able to reduce my cocodamol and sleep better since being on it. Not for everyone but maybe worth a try.
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