ive had fybromyalgia for about 15 years now and am still amazed at the ignorance over it ..not only doctors but family too ...anyone would think it was a death sentance ! ...
ive been told " o you poor thing" ...or my favourite from doctors .." o ...well not much i can do for you " ..basically its grin and bear it mostly ...
even been sent to see a cardiac specialist by one doctor and put through tests all because the fybro affected my chest badly one day ...then to be told my hearts fine and it was the fybro ....
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sallyanna1
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I think it's because they don't have a clue what it is or what to do! All they know is it causes pain. The problem is most of us have a lot of other issues to deal with on top of the fibro. Oh well aches and pains with very little sleep!
this is so true ....i cant take anti inflammatories so basically been told to stick to paracetamol and deal with it ....o and exercise might help ...nearly killed the doctor for that one ! ....
its hard to explain to someone medical though ..a lot seem to be stuck in this " its a woman thing mainly " ....and if i get one more sideways look at the mention of fybro i might forget how much it hurts to move and do something drastic! ...
Oh those sie ways condescending looks that say,"poor you, still believing in fairy tales",
The last one i got was from an adult mental health specialist, My brain fog went down as a vascular problem.
So i was in a fighting mood when i went for the follow up last thursday, but surprise, surprise. A different Nut doctor, she was well up on fibro fog but admitted that she was self taught, when she started getting more and more fibro patients.
ive never been referrred to anyone since got my diagnosis 15 or so years ago ..since then its a case of try these pills and see what happens ...cost me a fortune for pills that dont work or have bad side effects ...dont think ill be referrred to anyone again as as far as the docs are concerned im dealing with it ...course being told your going through the menopause dont help either .....
i get so frustrated though as i feel like im not being taken seriously anymore ...grrrrr ...
had a load of blood tests last month ..only to be told that although i have arthritis its not the problem its the fybro causing my feet to be very painful etc ....and if i hear one more doctor telling me its stress i will kill them ! ....
probably explains why i have a terrible sense of humour now though ......either laugh about it or end up crying
You and me both! I think I just might show them how much a cane can hurt! And then say oh that hurt so sorry! Touch my tender spot just one more time!!! Lol sorry I just really don't like to hear oh it's a woman thing! Thank goodness my neurologist has a brother and sister with fibro. He is so sweet!
Hi Sallyanna,
A very warm welcome to you as our friends have mentioned some of the GP's have not got a clue. They seem to blame the majority of being unwell on fibro and sometimes the real cause of a illness is never identified.
I do think that some of the Doc's need to go back to basics. If Fibro has been around for many years then more research is needed to test for it and not miss any other underlying illness.
Some people I know have been fogged off for years, insisted they are seen by a specialist and It's not been Fibro but something completely different they have had. They actually thought they were going insane, but hay ho It paid off.
I'm certainly not saying to hound Doctor's but we need to find a way to make them listen(not all of them, my Doc is very good) Mabe If we educate ourselves, that would be a good start.
thank you ....ive had tests for heart problems and its not my heart ..although my kids laughed at me having a heart that works and isnt full of ice ! ...
my gp isnt too bad ...he is sympathetic and does try to understand ..
im just unlucky that i cant take anti inflammatories ..the only one that really worked was diclofenic but im not allowed that as it causes my stomach problems ....i just wish medical people would be a bit more open minded though ....try explaining fybro fog to someone who doesnt know what its like to live with ! ..one told me to write everything down..works in principle ..now where did i put the paper i wrote the appointment on ? ...haha
Found It Salleyanna, I'll get It for you now, OH NOOOOOOOOOO, I'v lost It again(he he)
Did the Doc precsribe Opramazole or something similar to take with Diclofenac to help ease the tummy problems.
i had omeprazole .....was ok ..but my gp told me he wouldnt prescribe me diclofenic as last year i ended up in hospital with a massive acid attack that triggered the fybro quite badly thanks to the diclofenic .....
basically im stuck with paracetamol as a pain relief now ......
cant take anything with codeine in it either ...so i said to the doctor ...
" basically im buggered for pain relief arent i ?" ...he said sorry yes you are ..told him to shoot me now and get it over with ...kinder in the long run ..
his laughter followed me all the way out of the consulting room !!!
Glad your great sense of humour gets you through There has to be something apart fom Paracetomal that they can give you. Why dont you do a little research on the internet? Gabapentin?
ive tried tramadol and amytriptyline ...they both keep me awake and i dont need the fuzzy feeling the give me anyway ..no need to make the fybro fog worse !!!! ...
apparently i cant take those kind of drugs as they have the opposite affect which my gp told happens to some ..
i just laughed and told him to add it to the list !!
Multivitamins with minerals, calcichew (obviously), extra vitamin D, alendronic acid, glucosamine.
But I have been told that it was the exercise that probably did the most good. Check and make sure that your bone density is good. Get a dexa scan done make sure you're ok BEFORE. You start. Then most of the exercise must be weight bearing. So swimming while very good for you is not much use for osteoporosis.
Treadmill, cross trainer, cycling (ok as you push your legs against the pedals. Effectively making it weight bearing.
Rowing machine.
Free weights leg press, leg extension, leg curl
Chest press upper back press lat pull down and ab crunch.
That was my regime 4x a week. It took about 2 hours and was bloody hard work to start with. But build up slowly and you'll find it gets easier as you exercise for an extended period.
I went to my gp on Monday , wasn't to sure how it was going to go as was very negative a month ago...to my amazement even though she was in a rush, she gave me all the time I needed to explain the changes ,sorted out any meds updated and appointments required..once this was done she took extra time to go through everything said to make sure I understood everything!!
Get this , for the first time she actually acknowledged that I had fibro!!!!!
I came out feeling like I had made great leaps in understanding with my gp😀😀
H glad you've joined. I have found it very helpful with all the comments on here and don't thing I would get through the day sometime. I don't always post thing myself . I hope you find answers to help you to. Take care x
Have you tried a Tens or EMS unit for pain? Oh and I think I found your list how it made it over the pond I will never know. Now if I could just remember where I put it! Maybe someone else will find it?
I would test one before you buy one. I have problems with meds also. I use a EMS unit. Sorta like a tens but works on different frequency. I only use mine when pain is unreal! And only 1 hour a day. So it's not like you have to use it all the time. Just when you have too.
i might give it a go ......today im taking it easy and resting a lot more ..pains at what i call liveable with ..not quite nuclear yet ....my partner asked me to describe what its like having fybro and i said ..its like walking through treacle very painfully ...makes you tired and i get very anti social when im in a lot of pain ...my friends are used to me not chatting much when im having a flare up which is good ...
Welcome to the club unfortunately it is one that all of us do not wish to be a member of. Yes fibro seems to be one of the most misunderstood of illnesses if you have osteo, RA, lupus or something similar people seem to be able to relate to that but not fibro. If someone seems to understand you feel like kissing them.
We are selling our house and I must have suddenly gone very pale and tired looking as it was the third couple I had shown around that day. The lady asked if I was okay and I said "it is just my fibro playing up" she immediately told me to sit down and rest and she was quite happy for OH to show them around as her father's partner had it and she had seen how ill it made her.
Do join in the posts as it is lovely to have fresh thoughts on things as everyone can bring something valuable to the table.xxx
its a hard condition to understand though ...most doctors have told me its down to stress or depression ..when i reply that i dont have stress and i only get depressed when the fybro kicks in on me ....i got told that i am a anxious person ! ......i retaliated with well when dealing with anyone who doesnt understand fybro it does make me anxious as i feel im being ignored or treated like an idiot ....i was surprised when the doctor who said this apologised and said he didnt really understand fybro but would make more effort to try and understand ...i was so shocked i nearly cried ...
It is awful but sometimes we have to retailiate as I don't think they understand how dismissive and hurtful certain remarks can be. I have always been very proactive on behalf of other people but not myself but when I got more proactive with the doctor I found I got a much better more understanding response especially when I said I am not seeking any extra medication I would just like to see whether physio/hydro or needle acupuncture would help. He had had egg on his face though by insisting the pain in my hip could not be osteo as I could move my hip around too easily and when he did agree to ask for Xrays for me the results came back that I had osteo in both hips.
Yes I think the majority of us only get anxiety because of being misunderstood and not knowing what the future holds and the depression from not being the people we were or want to be and because of the continous pain.x
Welcome to the forum and it is wonderful to make your acquaintance. I sincerely hope that you find the forum useful, informative and loads of fun! I am so sorry to read of your pain and struggle and I want to genuinely wish you all the best of luck.
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hi im new to the group, im so happy i found this group cos i dont have anyone to talk to about how this is all affecting me 
Hi, I’ve joined here because I’ve just been diagnosed with fibromyalgia I’m desperate to know I’m not alone in this. 
Doctors/specialist- DLA
I HAD A SHOUT OUT WITH GP THIS MORNING, I WAS SO ANGRY....!!! but i had only had 2 hrs sleep last night..
