Phantom Pain

I suffer with fibromyalgia, and osteo arthritis and irritable bowel syndrome. I started off suffering from Graves disease which was the beginning of my nightmares. Some medical professionals can be cruel with their words and "being knowledgable". I have worked all my life, putting my daughters through private education yet I was a single mum. Now that I am long term ill I find that I am told that I have this "in my mind". How sad this is! This is an illness which takes over one's life and creates havoc at will. I can exchange this for my previous life any time. I have never been kept nor have I failed to look after me and my family in my life. Is it a crime to be ill? I say to all the Fibro sufferes, "Stand your ground, fight your own corner"I never applied for it nor wanted it. I say to anyone suffering with this illness, take care of yourself, we have been called all sorts of names but only we know that we fight every day of our lives to do diferent things. I would like to encourage you all for being so strong and brave. Live your life the way you want and try to help those around you. I have been told that "It is all in your head, if only we can take away all this medication and reduce this drugging of you, just imagine what you could achive. This is simply phantom pain and nothing else." What can be worse than that. I was depressed, cried a lot but I have decided that I am braver than that and I AM AN OVERCOMER AND A WINNER" Chin up

19 Replies

  • Hi Mamina,

    Well done you for supporting your daughter and working so hard to achieve this. You know that it isn't in your mind and all of the fibrettes on here know that too. Maybe you need to be referred to someone at Guys Hospital or somewhere where they specialise in fibro etc? Just a thort but I am sure other people on here, far more knowledgeable than me could advise you or sugges things in this vain. I was diagnosed with fibro 6 years ago but had symptoms over 20 years ago following a car accident. Re your ibs, I have this but I have tracked down what makes mine worse. Not sure if you have but the things that trigger mine apart from stress of course is wheat, but depends in what form ie cheap bread a no no but Roberts bread is ok, anything that doesn't say Gluten free can have I think its 25% hidden wheat that nobody seems to know or realise. Its in everything, chocolate, ice cream, chocolate drinks. I cut all wheat out for a few years as I was terribly poorly but have managed to go back on to certain things now. Are you by any chance taking Citalopram or another antidepressant? I felt so well on Citalopram but after a while it kicked my ibs off sooo badly so I had to change to esctilopram instead and am ok with that. Could be that, worth a thought and see if you could change to something else maybe? I don't have a lot of painkillers I use arnica gel from SBC ordered via QVC for my pain and rub it in every day and it has helped me no end. If you could cope with a massage and you have a college near you see if you can get a massage there. Ive done that recently because they wanted to us me as a case study! Sometimes its free or cheap for what you get. Sounds unlikely and daft I know but five or ten minutes in the gym does help me again with my pain. Hard to do it when you are feeling low and in pain but just a little can help and you can build it up. Maybe get exercise on prescription from GP? Good luck well done you and hope something I've said helps you if only a little. Big hugs Ruby xx

  • I realise you have problems but I so disagree about Phantom pain! Because it is misunderstood that does not make it phantom. If you hurt or in pain something is wrong - it may be your brain telling you to slow down to stop what ever but it is the realest pain. Like most things it hurts for a reason. If you are unable to exercise then diversion is a good idea something to make you think of other things. Many of us Fibro sufferers also have other things wrong with us for example Osteoarthritis - arthritis - osteoporosis - to name but a few.

    Take heart


    is real!

    It makes us feel!

    Have a good day x gins

  • Gins when I read this post by Mamina (which is excellent by the way :-) ) I read "This is simply phantom pain" as her quoting what the medical proffession had said to her? I dont think she is saying Fybro pain is "phantom pain" because I would imagine anyone with Fybro would never think that? I could be wrong but just thought Id say ....and I entirely agree this pain is as real as labour pain is! xx

  • Yep! it is fibro that is being called phantom pain and in my head "Actually using her finger tapping her head with both hands". I stayed calm but was seeething inside. I told myself, that the day will come for me to speak up when I get calmer about it.

  • Chronic pai is no joke. Muscles feel like a bus rolled over you and on days you cannot even get up fast asleep for more than 24hrs failing to eat just getting up once to the loo cannot be phantom pain. It is abuse of position.

  • Ouch! What a thing for a doctor to say.

    Any Pain Management doctor worth the paper his degree is printed on knows that when it comes to pain, perception is reality. If your brain thinks you are in pain, that is pain. It doesn't matter whether it is from a broken bone or the abnormal brain processing (and knock-on effects) of Fibro.

  • Love your post Mamina, and agree that most of the medical proffession seem to have an "opinion" of people with Fybro. My GP makes me feel like I am looking for an excuse to do nothing! like I want this condition! ( I might add I did have to give up going out to full time work but by no means gave up all together and went back to being a foster carer and at the moment care for a 17yr old about to give birth next week!) I push my own boundaries constantly...I just wish those that judge could walk in our shoes for just one day :-( then maybe they would understand. I do believe that there is a stigma with having there sometimes is with depression. Well done you for raising your girls alone, I too have always been a single parent and foster parent for over 20yrs! maybe Fybro is our bodies way of saying whoooaaaa slow down!! or stop!...I just wish my body would tell it to me in a gentler way :-) Being a single parent can be very stressfull, being that strong person for all those years takes its toll and I firmly believe that my Fybro is related to the stress ive had in my life.

    stay strong xxxx

  • Hi Kasha,

    "Don't judge my journey till you've walked my path" is a good one and so very very true. Saw a post on FB, So i don't look ill...well you don't look stupid, but there you go, cracked me up.

    it's really annoying when people say "oh you look ok" face and slap spring to mind. We live in a very judgemental society sadly, but i just think, well folk can think what they want i really don't give a stuff, those that know me....know me and that's all that matters.

    Take care

    Jan xx

  • ha ha Jan, youve given me a couple of FB statuses there! lol Unfortunately the people that know me and know how active and in control Ive always been seem to be the hardest to convince that I just cannot do what I used to do anymore :-( because I "look" ok they think I am fighting fit behind this fixed smile! oh well I know i need to just leave them to it and look after myself...thanks for you comments xxxx

  • you're welcome Kasha, , got some crackers on my fb page courtesy of various folk.

    Yes i was also very active, had to slow down a bit now, decrepit old fart springs to mind lol., but hope springs eternal, and i'm on a bit of an up at the moment, thanks to an osteopath, how long it will last god knows.

    Know exactly what you say, An up hill battle trying to get people to actually realise there is something wrong.

    Yes leave them to it and don't let it stress you out,

    Take care

    Jan xx

  • Hi Mamina,

    How very true, all my problems stem back to Graves/over active thyroid 6 years ago. It left me with Thyroid eye disease, horrific i can tell you, and i had eye surgery last Nov which has helped thankfully.

    someone said oh i wish i'd got a thyroid disease it makes you lose weight doesn't it, i honestly could have slapped her i was so stunned and annoyed , yes despite constant eating you do lose a lot of wieght, but if only she knew the pain, joint inflammation, shakes, inability to move some days, not sleeping, continually being on the go and the constant name but some.

    I'm actually pleased to see someone else's problems started with thyroid, in the nicest possible way :-) , as i've long thought that was the trigger for my fibro. doc also thought it might be but nothing conclusive seemed to pop up, apart from glandular fever 3 years ago.

    Well done on doing such a great job with your daughters, you must be proud and why not xx

    "all in your head"...ppfftt, pain is pain...end of. We do struggle on a daily basis, but i refuse to be ground down for too long, if i'm having a bad day, well i resign myself to the fact today is a s**t day, tomorrow might be better, do what i can and if i can't, the housework etc will always be there so i won't beat myself up for not doing it because i'm struggling.

    I think we've actually got to allow ourselves to be poorly and give in at times, why not overdoing it sure doesn't help.

    Take care


    Jan xx

  • one thing i will say when so called proffessionals who are dealing with people who are in pain should take a course in people skills first before opening their mouths. I was told by a pain management nurse that i was managing my pain i was gobsmacked as i had begged my dr to be referred for some acupuncture to help me then had a nurse who supposed to help making me feel as though i wasn't in pain. as a person who is usually strong i have been reduced to tears by the pain caused by fibromyalgia. some days i can't walk and feel totally useless. I have learned to let go of tears instead of holding back to not upset my family. good luck you sound as though you will stand your ground with the so called proffessionals who are supposed to be helping you not judging you because they don't understand your pain. Anyone with half a brain understands that Pain or illness will also bring with it dissapointment and a grieving process for the life once lived when things weren't as hard every day. I have just been diagnosed with ibs and graves disease so am coming to terms with that unfortunately i realise the people around me can't possibly understand and that only people who have the same conditions can possibly understand what i am going through.

    i do use a tens mc to divert the pain messages away from my hip and leg and it has helped me

    take care and try and stay strong


  • I agree here, 1stly Why are we refered to pain management ? We did not refer ourselves!! Hoh shock , likewise my pain so widespread that cannot be dealt with .. Hmmm well fortunate for me i know and understand enough and have contacts to know that you can have injections in numerous places!

    But after this wkend i am insisting now my neck gets one i cannot cope anymore to stage being lifted off the bed in so much pain!

    We have it hard enough like others say, coming to terms and adapting as it is, so i say if they refuse surgery then injections a must.

    It would benefit me for wrk with driving as it has a longer lasting effect of about 6mnths! Where the pills wear off or hardly wrk and have to up the dosage. Staff not always reliable so my hands and neck for drivings my asset.

    Well i hope eventually this illness is made more aware and accepted as much as other problems xxxxxxxx love to you all keep strong, keep fighting & keep smiling! Except infront of professionals now let them feel what we feel the FIRM answers ! Xx

  • The neck injection might be dangerous as this is where most major muscles and nerves come together. My neck drives me mad as well but I have never heard of the injections. I have been referred to the pain clinic again as I also have recently been diagnosed with scolliosis(Curvature of spine) and have very ba sciatica as well as osteo arthritis. Seems a bit much but my life goes on regarddless.

  • Hey, I started with Graves disease, was on carbimazole for 9 months and was told it had gone into remission. Because in Graves disease your system attacks itself, I have always believed that this is the reason why I became like I am now. I have believed that my fibrous tissue was destroyed by Graves D. I now have partial sight and have been grieving that life lost for a long time. Tears are normal with Graves, I was very weepy toso much so that too and could cry at the slightest offfence or joke. Being tearful will help you to release all the pain and tension within you. Please eat well and protect your health. I was diagnosed with IBS and many other ailments during my Graves. That was when I was diagnosed with the muskulopain which was only diagnosed as myalgia. My legs felt heavy, weak and ached badly from then till now.. Because graves is an autoimune disorder I fill that it led to this fibro condition. I have peripheral vision which is very helpful. Take good care of YOURSELF and rest as much as possible.

  • Mamina wow! What an amazing and inspirational message you posted! If all Fibro sufferers stood shoulder to shoulder can you imagine the size of our army! We have to be strong, we have to fight in our own corner, we have to spread awareness of this ghastly condition that has changed our lives so dramatically. We still remain unheard to so many who refuse to recognise the extent this condition has on our lives, the depth of our pain and how we struggle every day with the things they consider normal and that are monumental to us.

    Your words are very powerful and so true, give yourself a gentle pat on the back Mamina! One day all our voices will be heard, it's just a matter of time. Keep fighting folks! :D

  • Thanks I thanks. I could not believe my eyes when I found this sitte. You are right indeed. Let us stand together and fight for recognition instead of sitting silently and taking all this in. It is lack of knowledge that causes some medical professionals to say such things and not aware of our plight. Come on soldiers let us take this fight to the next level by campaigning together.

  • Hi Mamina,

    Like you i have 4 kids and hubby and all workers!

    This is so cruel and i feel like a Voodoo Doll ! Would be better serving a life sentence!

    I am under clinical neuro physcologist..

    Why in the world would we want something that is 'suposidly' in our heads.... YET we alll get diagnosed with the same thing! It is a chronic illness that mimics a lot of symptoms similar to others, something has to 'trigger' it (in my case hernia operation 2010 left 2 wks traumar not knowing pain after scans to go back theatre and had nerves wrapped in screws) i was right, nothing but problems, severe sciatica both sides, neck and compression on nerves (proof)

    So how on earth do they even think these things are in our head?!? I want further investigations and i am! Titanium if allergic can trigger uour autoimmune system .

    Anyway Mamina you remember that you are strong and ask your self or them why put me on medications that stop the nerves comunicating which is not like taking a paracetomol for headache.

    This is medication for those who suffer epilepsy and seizures too (lyrica) why allow such a strong expensive drug to be used if its in your head.

    Excuse me today my heads foggy too am all over today so apologies if all seems gobbly gook and think too, your hubby and kids and friends know what your like.

    My job is very physical and peevs me off personally passing around .

    Inbox anytime or chat xxxfluffy hugs

  • Get Well and thanks it is clear that the doctor does not understand what she is talking about and has no idea at all about fibro and its problems. Dont worry I get the fog as well.

    I never prescribes that to myself. Ha! Ha! Haaaaaa!!!!!

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