That feeling when no one listens!

So I've suffered with fibromyalgia since I was 18 and chronic migraine since I was 12. Recently I've been collapsing, have no hunger feelings or desire to eat(but of course I still do it just hurts) and barely have the strength to hold my head up. Been having 4 day stints and more with literally no sleep so I was hoping a call from the doctor today would get me to some form of step forward, instead I was told to increase one of my many pain reliefs and nothing else. No support or reassurance which just makes that feeling of being alone with this "invisible disease " so much worse. Has anyone had any help with pain management or have any home remedies they find can help?  I feel like im cracking up! I'm only 24 and just don't know how Im supposed to enjoy myself or just plod along with everyday things when I have 0 energy to sit up :( any tips would be super appreciated 

53 Replies

  • I'm sorry to hear of your pain and other islsues.Im here to listen if you need to talk but when it comes to that type of info blue mermaid is most competent in this area and many others you may need help in. You may pm her .Good luck.Peck🌻

  • I am so sorry you are feeling like this, I know exactly how you feel. Unfortunately I have no idea how to help. I have an intolerance, to most Medications, so I just plod along as best I can. I sincerely hope you can get some answers. Sending soft gentle Hugs. x 

  • I must say your a brave one dealing without meds!  Good luck and keep plodding :) x

  • it's never easy when you feel that you have been fobbed off. We have all been there sadly.

    The best thing I was taught at pain management was pacing. There is bound to be several articles online to describe the process. Won't make the pain vanish, it's no magic wand. But it may help 🐸

  • Thanks for all the help and support guys :) made me feel better after my rant and breakdown! Its nice to know there's people out there who just get it <3.

  • Have you haad vitamin d levels checked, a lot of fibro peeps have very low levels whivh causes more pain. Epsom salts in bath also very goid for muscle pain. Massage is also good if you can find the right person to suit you . All the best

  • I had a full blood count done and everything came back normal and I do take vitamins to try help myself the best I can.

    I just started using Epsom salt as seen online it's good for muscles, had to stop for a while as cut all my ankle open falling and it advises bot to use with broken skin but ill be right back using it once I'm all healed.

    Ill have to search for a masseur that works I find it excruciating at the moment like there squeezing lots of bruises :| 

    Thanks for the advice! Same to you.

  • Hiya

    Apologies for butting in.  Did you know that falling and balance issues are quite common in people with Fibro?

    Yet another thing to add to the list of symptoms!

    Lu xx

  • No need to apologise I am very grateful for any suggestions.  

    I knew falling was but didn't realise that is why my balance is so awful and why I randomly fall to one side just standing.  Arent we so lucky with a list as big as ours :| 


  • Lol :)  My list is never ending.  My balance, or rather lack of it, is appalling.  Just standing in a queue I can fall over xx

  • Yeh mine too lol I think I must look so silly sometimes when I'm just browsing and start to suddenly lean to one side or look like I've just tripped over an imaginary brick hehe you've got to laugh 


  • I get quite embarrassed to be honest. I always think people assume that I'm drunk! xx

  • Lol I wouldn't be surprised if they did people can be quite closed minded! It's always embarrassing when you fall into someone,  now that's an awkward conversation! I think we just have to try remember to thank our lucky starts we can still use our legs as wobbly as they are!


  • Yes, very true. I am in constant pain but I am mobile for which I'm incredibly grateful. 

    How's your day been? xx

  • Yeh me too! Quite a sore one today. My hands and wrists especially weren't behaving. dropped my rice all over me off my hands shaking and dropped an egg which went everywhere! Little embarrassing for me today :( how about you? 


  • Isn't it just awful trying to clear up a dropped egg!  

    I'm assuming it wasn't a chocolate one. I could easily clear one of those up 😀

    It's been a difficult day so I'm desperately hoping for some sleep tonight xx

  • I'm glad I've seen this as my fiancée has fibro and is in alot of pain and falls down a lot. I'll tell him about massage but is there any thing else people do or use . he is also not sleeping .

  • Hi Spudster

    Have you read my initial reply to this post? The very long one.

    If not it might be an idea. You're very welcome to put up your own post if you would like to ask any questions. 

    Pretty much the main cause of Fibro is lack of sleep. We don't sleep long enough to reach Stage 4 REM which is when all the cells in a "normal" person are renewed and a general healing process happens  

    This is why so many of us wake up shattered.

    As for balance the only thing I can think of is a cane or stick.

    Does any of that help?

    Lu x


  • Thank you ,yes it does he currently has a stick sometimes two. Do you think physio would help or would it make the muscles more tired

  • Hi

    Has he been referred to a Pain Management Clinic?  He may find that very useful.

    Yes, physio can be really good, even hydrotherapy if you are in an area that offers it.

    Get him to ask his GP to refer him for all of these things.

    Unfortunately unless you have an excellent GP, with a good understanding of Fibro, you will have to ask to be referred, rather than it automatically be offered.

    There are physio's who specialise in Fibromyalgia too.

    Because Fibro is such a complex condition and affects everyone completely differently, it is hard to say whether or not something will work.

    The only way to find out is to give it a try.

    I'm sorry I know that sounds harsh, but it is just a fact.

    Some people find a Sports Physio better.

    Wishing you both wellness and peace

    Lu xx

  • It's a really challenging thing to go through and one of the most important things you can do for him is show compassion and understanding and if he's in a low or bad mood chances are he's super tired and sore and just needs you to be there. we are really forgetful and exhausted so easily and it's hard to handle when people just think you're lazy . It's amazing when you find someone that just seems to get it. Hit baths and plenty layers sometimes help with the falling and not doing too much like walking around for ages or too fast.

    Good luck to you both 


  • Thank you,could I keep in touch.

  • Yeh course you can! if I can help in any way I'd love to. You're fiance is very luck to be honest. it's not often you can find a person never mind partner who cares that much to research themselves!  You're definitely a star :) xx

  • I can't handle deep massage either.  Have you tried Reiki?

  • To be honest the phsycologic therapist approach doesn't work for me . I tried once for my chronic migraines when I was with someone else at their therapy appointment. the therapist wanted to try something with me while she was having a breather and it did not help at all. I don't personally think you can make someone's chronic illness better by therapy, maybe you can help someone get to grips mentally to deal with the pain. But if a therapist reconditioning someones thoughts or using reiki methods was a cure(as some therapists seem to think since "its all in our head") , then surely researcher's wouldn't say there's no known cause or cure for it :/ that's just my opinion anyways .  Awesome if it can help anyone else. I'd kill for relief from the pain and exhaustion !

    Do you find that kind of thing helps you then? Just out of curiosity :)


  • I tried talk therapy with a woman who uses a lot of mindful meditation & actually felt worse because I feel like I got more focused on my physical symptoms.  

    I've done Physical Therapy, but I think it flares pain through adding inflammation.

    Reiki is a type of massage that uses touch, not deep kneading, and can be quite relaxing.  I've only done it twice but I did find it more helpful than deep tissue massage.

  • Ah well that's good then :)  I tried deep tissue and it was excruciating had to stop it pretty fast coz I just couldn't take it . I don't know if reiki would help me I've tried like touch rather than deep massage and acupuncture but no joy thus far 

  • Acupuncture wasn't what I expected. My doctor retired after I had just a few treatments so maybe I didn't give it enough of a chance.

    I know many people who swear by it.

  • I was the same! I think the whole concept of it is quite strange but also fascinating. Yeh that could well be the case. If I remember rightly I had around 12 sessions , using different points if nothing was gained from the current ones they were using and since there was no relief they thought it best to call it a day. I too know a lot of people who swear by it. By the sounds of it it may well be worth you giving it another try :) It's a much more natural way to help too instead of increasing or adding meds .

  • Ironically, it triggered a flare in one of my shoulders, so I had to take ibuprofento settle down the spasms :-(

  • Very ironic indeed. I find that can happen with quite a few methods. I guess  it could sometimes simply be due to it being new to your body and may not happen after a few sessions "/ Perseverance, patience and willingness is most definitely needed with this condition that's for sure! 

    Good luck if you do end up getting any more acupuncture :)x

  • Ps I hope that the spasms didn't cause you too much bother and pain from it or last very long! I'd be quite interested to hear how you get on if you do go for more. :) x

  • They lasted about 3 days, even with ice, heat, and ibuprofen.  The first day was excruciating then more of a nuisance. My friend sees a more traditionalChinese Medicine Doctor referred by her surgeon & swears it's a different experience.

    Did you say you already tried Physical Therapy?

  • Aww bless you! That must of been a horrific 3 days. Glad it didn't go on constantly past that! 

    Ahh I see , so what sort of stuff does the Chinese medicine entail? if you don't mind my asking. Does your friend also have fibromyalgia?

    its quite intriguing all of the different methods there are and why they can work for one but not another. Fibro is just so different from one to the next. 

    I did yeh, unfortunately it didn't work for me . I am happy to try anything once for any form of relief  (as longs as it's not completely irrelevant and the reason  behind the theory is explained to me) I like to know what's going on lol.

    I do have a referral to a fibro/cfs specialist in a pain management clinic (if you didn't spot my other post) so I'm eager to see  what sort of things that entails, perhaps a different spin on physical therapy may also be offered there . I shall keep all updated about my experiences with him , whatever the outcome :) x

  • Hi there

    I was diagnosed with Fibro and Chronic Fatigue when I was 20 so I do have an idea of how you are feeling.  I am now 55.

    My advice to you would be to make an appointment to see your GP.  Take someone with you (a friend or family member) and ask to be referred to a Pain Management Clinic.  Not a Pain Clinic.  GP's tend to be more willing to help when someone else is there with you.

    The difference is that a Pain Management Clinic will help you to understand pain and is a course of about 6 'lessons' which also offer other help, depending what area you live in.

    A Pain Clinic is more related to the medications that you are taking.

    As I do not know what you have already tried you could also ask your GP to refer you for physio, CBT (Cognitive Behavioural Therapy) which is a talking therapy, hydrotherapy (if it is available in your area) and the two Clinics I've mentioned above.

    My personal advice would be to tackle one thing at a time.  Otherwise you will not know what has worked and what hasn't.  

    I don't like recommending medication because I am not medically trained, but many Rheumatologists prescribe Amitryptyline as a starting medication.  This particular drug is an antidepressant, but aids sleep, pain and low mood.

    If you haven't tried it, perhaps it is something that you can discuss with your GP?

    I do hope that the above has given you somewhere to start?

    Please do let us know how you get on.

    Lu x

    Volunteer Administrator

  • Hi thank you for all your suggestions its a great starting point for me. 

    I actually did ask to do some hydrotherapy and my doctor said he had never heard of it before. Not sure if perhaps I was being fobbed off to be honest. 

    I tried physio and it made my flare ups a lot more severe and longer lasting. Once I had gave it a go a couple of times I could not walk for 3 days so we sort of moved on from that but that was the only thing I have ever been offered and my doctors have offered nothing else or even ask me how im managing when i go in.

    I think I will get an appointment and take my mam and see if that makes a difference. 

    I currently already take Amitriptyline, tramadol and naproxen for the pain and the doctors call ended with him telling me to increase the dose of Amitriptyline to try and help with my insomnia as I am soooo tired I think that is a good starting point to get a better hold on that issue. 

    I feel a little more confident that I am not crazy and there clearly are helps out there that arent just another pill. I guess I may have a poorly educated area in fibro but fingers crossed. Ill keep you updated with my next contact with the docs to see how we get on.

    Thank you for your help and kind words Lu! xx

  • Hi again

    I am more than happy to share my experiences with you.  You can ask me anything you want to.  

    I am not an expert, I have just had Fibro for 34 years and have tried everything I can think of!

    The problem with Fibro is that it is a very complex condition that affects everyone of us in completely different ways.

    What works for me, may not work for you.

    Have you tried paracetamol with codeine in it?  You could ask your GP about that.  Cocodamol (can't remember how to spell it!!).

    Please do not worry about not being educated in Fibro.  I obviously cannot speak for everyone, but I think that many of us have learned what we do know from others here.

    GP's very rarely tell you what they can help you with.  Often you need to ask them!

    Please do consider asking your GP for a referral to either a Pain Clinic or Pain Management Clinic - whichever one you feel may help the most.  There is usually a 3-6 month waiting list for these Clinics, so the sooner you get referred the better.

    Have you seen a Rheumatologist?  If not, that might be another area you could look into?

    Lack of sleep is a primary cause of Fibromyalgia.  We do not enter Stage 4 REM sleep which is where the body naturally renews cells and the body restores itself.  That's why the majority of us wake up (if we get to sleep in the first place) tired.

    There is an awful lot to learn and take in, so don't beat yourself up about not knowing things.

    If you would prefer not to take more medication have a look into heat pads and cooling gels.  If you want to know more about them, I can let you know what I have tried and use.

    If I can help you with anything at all, I would be more than happy to.  

    It can take years to get the right set of meds, diet and other therapies so be patient with yourself and don't hesitate to ask any questions.

    Please let me know how you get on.  

    Hugs Lu x

    Volunteer Administrator

  • I would have thought almost 7 years with the condition I would know more than I did,  I wish I found this support from here sooner! Wow!! You're such a strong trooper to have been going through this for that long! I honestly sometimes don't know how Im supposed to cope so big well done to you :) 

    I have tried cocodamol yes and gained no relief at all unfortunately. Taking 2 tramadol and 2 naproxen together helps me deal with the pain. Sometimes even 1 tramadol 2 naproxen on a good day :p

    I've tried a lot of medication and I think I've definitely found that combination best for me.

    No I have never been referred to or saw any specialists to be honest when I was diagnosed they gave me a leaflet thing to read about what I have and a prescription for 100 tramadol and that was it so not the best! 

    I will definitely be asking to go to a pain management clinic, thats what I would like help with learning how to cope on those really hard and low painful days you know.

    I will most certainly be picking your brains for help and advice when I need to now so thanks for that !

    I've tried gels and heat pads I get no relief.  I find a hot water bottle , hot bath with little to no cold water give me around 20 mins comfort and those full body heat and massage mats can help if not too sore to the touch. 

    I will most definitely be mentioning the specialists and treatment you have let me know about and to he honest it's nicer talking to someone who is going through the same as you than a doctor as that someone always seems to show genuine care in helping and support :)


  • Before I forget ... Is that your bracelet? If so, where did you get it?

    Have you tried 2 Tramadol and 2 CoCodamol at the same time?

    I know there are other treatments that you can be referred for, but my brain let me down. Or my Brian as I call it :)

    I'll be honest, it hasn't been easy.  24/7 pain is hugely debilitating. 

    You're very welcome to pick my Brian anytime :) I wish there had been something like this when I was first diagnosed. 

    Funnily enough I've just had a very hot bath to try to ease some pain. 

    It is wonderful chatting with others who understand xx

  • It's not mine I love it though.  I went for a different one with a circle pendant with the word fibromyalgia and the fibro ribon and a heart with my initial in (soo excited to get it) but you can buy the one on my pic and loads more from and part of the money goes toward helping fibro research to try get a better understanding and people seeing your bracelet makes them more aware.

    I haven't actually I'll give that a try.

    I must admit that tickled me a little , your Brian sounds so sweet :) 

    I know the feeling! You should be super proud you've done it that long. you're a true warrior! 

    Thanks a lot I can feel I am going to learn a lot from you :) 

    Yeah me too. I find it gives me just enough time to get myself into bed in a position I want to be in before its a much harder challenge. 

    It certainly is. Speaking to everyone on here has definitely brightened up a low one for me :) xx

  • Hi my friend

    How are you doing?  I just wanted to mention that you may wish to change your Naproxen for something different.

    Naproxen is an anti-inflammatory medication.  As far as is known, Fibro is not an inflammatory condition, so you could find that this med is not working for you.

    Have you ever tried Gabapentin or Pregablin?  If not, let me know and we can discuss it further.

    I really want one of those bracelets!  I think all of us here have earned our stripes and are Fibro Warriors however long they have been suffering.

    Hopefully it goes without saying that my Brian is available whenever you want to ask anything, however big or small!!

    I do not, and never would claim to be an expert.  I am just happy to share my experiences in the hope that it will help others.

    Take care of yourself

    Lu xx

  • Hey there , not too bad managed to get myself back to work today and my days did it take it out of me. rather sore and exhausted but I did it :) 

    I thought that when they gave me it to be honest but they said it apparently works well with the tramadol.

    I have tried both yeh no joy for me unfortunately when I did try them.

    You should get yourself one! They're all quite well priced to ne honest. I think we have how much we need to battle with each day! 

    It sure does I feel more than happy to ask your advice and opinion in things so thanks again for working your Brian for me :) 

    It's lovely how much you like to and want to help !

    Hope you're doing well yourself and things aren't too sore for you :) 


  • You need more bloods done hunny sounds like your deficient in iron at least if ratings a chore you need proper checks not it brushing off hunny good luck sending you love n hugs xxxxxx

  • Thats what I thought but I had my bloods done recently for a seperate thing , a full blood count still and everything was normal. Very confusing thing this can be. thanks for your help and kind words xxx

  • Bless you hunny I hope you get sorted hunny hopefully the doctor will revaluation and send you to a specialist some gps don't understand our condition and that's when we get fobbed off. Hope u get a good doctor xxxxx

  • Thank you!  Fingers crossed I can find someone that gets it! Xxx

  • Hi Kayleigh, so sorry you are having such a rough time. I really do understand as that is exactly what I have been going through and the couple of months my insomnia has got so bad.  I have found that a natural supplement called Magnesium Malate, which is magnesium which all people are generally not getting enough of because of not enough nutrients in soil through overproduction. People with FM are advised to take supplements of Magnesium to help muscles and helps with sleep.

    I spent weeks researching magnesium and found that there are 4 or 5 different types making it difficult to decide which is best, but found an article where someone else had gone through it all too and gave his suggestions as to which to try.

    The top one is MAGNESIUM MALATE which has Magnesium and Malic Acid and the combination of the two help with fibro. I have been taking this and melatonin for the past week. I found that it bests to take 2 a few hours before bed, together with melatonin (but see what I have put re melatonin below).  This has finally helped me. 

    I got the SOURCE NATURAL brand for Magnesium Malate, which my friends reliably informed me was a very good brand. The melatonin can only be sourced via US or some places charge extra, like Biovea I think (not sure about that one, brain fog). I found if I took the Mag Malate during the day as well as at night, that I had no energy in the day, didn't have much to start with.

    I  also take Melatonin, but started having problems with the time released one, as I had recently got a 5mg hitch was to high. So I tried cutting in half (only it crumbled, but still roughly took half and then 1mg of normal melatonin. 

    Melatonin is produced naturally by the body, but people with FM produce less, so you might find it useful. 

    Sorry, this is so long winded, but hope it helps.


  • Ah thanks for the help I have never heard about magnesium helping I think I'll have a look into that to see what's available at my chemists . I think I'd rather not be shipping things over to the UK , can't be to careful but getting my magnesium balance boosted alone is a good thing anyways. 

    Thank you for taking your time to go into so much detail it's a great help and thank you for your kind words! I'm glad to hear you're starting to feel a little more on the mend with it all , hope it stays that way :)

  • Hi Kayleigh, be careful because they are various types of magnesium, so do your research first. Some can cause stomach upsets. I have had no problems at all with the one I got which was from eBay. Make sure the brand is also reputable.

    Good luck.



  • Hi LaurieLee, thanks for the heads up ! I'll keep that in mind. Definitely be doing extensive research as I'd hate to add another problem through negligence. 

    :) x

  • Hi Kayleigh_91

    I am so genuinely sorry to read that you are suffering and struggling so much and I sincerely hope that you can find some resolution and relief to these issues. I can see that you have been given some wonderful replies to your post, and the only thing I can think of adding is, if your pain gets too much for you then pop along to your local ''Walk-In Centre'' and they may be able to help you? I want to sincerely wish you all the best of luck. Please take care of yourself.

    All my hopes and dreams for you


  • Thank you for your kind words ken , I have been overwhelmed with all the support and advise I have received :)

    Just have to keep battling through and hope for results! 

    Take care yourself too :) 

  • :)

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