Good morning all, I came across your group a few weeks ago and have been "standing at the back of the room listening in on all your conversations!" Have finally plucked up the courage to speak as I you are all so friendly and helpful despite the various pains you are coping with. I have not been diagnosed with fibro yet, despite suffering loads of symptoms since about age 15, I have recently turned 50 and finally saw a GP a month ago who said he though this is what I have. I had to make an appointment to see him the next day so he could write down all my symptoms for referral to rheumatology department but unfortunately he was called away and the lady doctor I saw instead didn't want to "step on his toes" and sent me away with a prescription for dehydracodeine tablets instead. I have been taking them, am finding they do sort of numb the pain but that only lasts for about 1 - 2 hours. I was told I could also take paracetamol or ibuprofen in between but have had those on prescription for years and I would be as well taking Smarties for all the good they do. I do need to go back & try to see the first doctor but was so pleased that he had given me some hope that my pain etc was not all in my head, that I never got his name to will have to try to describe him to the Gestapo at reception as best I can! Thank you all for cheering me up with your funny stories when I'm wide awake in the wee small hours and I'm Riverdancing in bed with jumpy legs, and also for reassuring me that I'm not going mad!
Wishing you all a day that is as comfortable as it possibly can be xx
Written by
Rubysgramma
To view profiles and participate in discussions please or .
Welcome aboard and check out mother site loads of information there!! If your going to be river dancing in bed I hope you have good music on!!! Also I love to watch river dancing it's amazing. I just don't think I have the coordination to ever do that! Congratulations on being able to do it!!😜😜😜😜😜😊😊😊😊 Sorry just being silly! I do feel for you. My cat decided to hop on the bed and lay down at my feet. Her mistake😳😳😳 in my defense I didn't know she was there until I kicked her off the bed😳😳😳🙄🙄🙄!
Thank you Regnofibro1, unfortunately I also have 2 left feet and my Riverdancing is very clumsy and more akin to Michael Barrymores' funny walk speeded up - no coordination whatsoever! I'm sure your cat will forgive you......eventually!!
We always shut our cat out of the lounge because we have a very large Persian carpet in there and she tends to 'sharpen her claws' on it. She has already caused a few tufts of wool and silk to be pulled out.
Today, we accidentally shut her IN the lounge - I blame it on fibro fog.
When we got home an hour later, she was sitting on the Persian carpet with big, round, panicky eyes and I swear I could see a speech-bubble coming out of her head saying "I didn't do nuffink, it wasn't me!"
Bless her, all we could do was give her a cuddle xx
They are wiser than we know, I never underestimate my pets. That's how they make us love them so much xx
Good Morning and welcome to our fabulous community
I'm sorry to hear that you have been suffering for a very long time and would say, pls make an urgent appointment to see the GP whom you saw first, write everything down and present this to him. Phone for an appointment everyday, if you have to, don't give up. It's the only way to get the help and support you so rightly deserve.
Many of us have had to do exactly this. Hold your head up high and get the respect and support you deserve.
Do let us all know how you get on Wishing you all the very best x
Thank you so very much Ryanbone & Poppy-poppy, I have phoned surgery and have an appointment with the doctor I saw first next Tuesday, the soonest day he will be there. Surgery has been manned by locums for last few years, which is annoying when you are filling in forms which ask for name of family doctor - almost non-existant nowadays! This will give me a long weekend to write everything down (if I can remember it all) at leisure and hopefully set wheels in motion! I think my symptoms have a lot to do with stress. My brother was tragically murdered when I was 13, he was only 17 and his loss devastated my family, I married at 22, had a very acrimonious divorce at 30 & brought up 2 children as a single mum although my family were amazing,I would not have coped without them. 6 years later I entered a relationship which became very violent but I felt trapped and it took nearly 7 years before I had the confidence to leave him. I'm so glad my children are level, well grounded & are happy grown ups. I have been with a wonderful kind man for over 6 years but 2 years ago my house flooded due to a burst pipe in loft, leaving me with the clothes I stood in and I am still living out of my home, hoping to get back soon & was made redundant from my job in July. Doesn't seem a lot over the years but I feel it has contributed somewhat. Anyway, thanks again, gentle hugs back xx
Wow that is a lot for anyone to go through.
I took a printout of the symptoms of fibro to my doctor. But before i gave it to him i ticked off all of my symptoms and added a note as to how they affect me.
I hadn't seen the list mayrose gave you the link for, I wonder how it prints out (?) I found it a little disjointed looking at it in that format - I'm easily confused Anyhow, I have a list on file, don't remember where I got it from, might be useful to compare the two. I also used it for Dr'd, specialists, ESA, DLA etc. Very useful
Gosh, you really do seem to have been through a huge amount of trauma, no wonder you ended up with fibro, like you I started suffering in my teens and am now in my fifties and had been through trauma too, so I understand exactly where you are coming from and you have my fullest sympathy!!
As you have no doubt seen we do like to have a bit of fun as well as addressing the serious side of fibro, which seems to help quite a few of us, laughter releases feel good endorphins and that in turn helps with the pain, at least that's what some of us find and taking ones mind off the daily grind of fibro has to be a good thing.
One thing I would also urge you to do when you see your GP is to ask him for a referral to a pain management team, the medication you are on is OK to some degree, but clearly not working properly for you and there are several other medications out there which may well give you much more in the way of pain relief.
I v y much look forward to getting to know you better around the forum and am sending you lots of positive, healing and soothing vibes to help you through to when you see your doctor. 😊
Hello newbie, I'm also with L plates. My name is Debbie and I was diagnosed with fibo back in Dec 2014 . I also have a spinal injury that makes my left leg cave in when walking and I need to use crutches or sometimes when getting out of chairs I my legs collapse. Anyway to top this I also have ceoliac disease which makes two autoimmune diseases , I have been warned ms could strike me as well, but not yet thankfully. I sometimes use a wheelchair if walking too far and can't work. I try to stay positive but not easy. I'm a busy mum of two teens so at least my family keep me active . Hope you get help you need , take care, x
Thank you all for your welcome & responses to my post, the links to those very helpful sites are gratefully appreciated & I will continue to refer to them on my fibro journey! It seems to be quite a bumpy road, I think I've been fairly lucky in only having a few really bad spells over the years when the pain was excruciating. One of the worst was a morning when I waved my then pre teenage daughter off to school from the front door..... then couldn't breathe properly, every breath was torture, which made me panic. My 10 year old son was in the house and phoned my mum who came right round, she rang the doctors surgery and was told to get me there as soon as she could. Luckily it was only a few minutes drive, but I struggled to get in and out if the car & was in tears. Turned out my whole back had gone into spasm & I had to have several muscle relaxant injections to ease it but it was over a week before I was pain free. A few occasions I've had to shuffle up & down stairs &round the house on my bum because my legs were too painful to walk. I'm more aware of the symptoms since being g made redundant in July - I've always been an early riser & didn't think anything of it but while I don't have work to get up for, I'm noticing how little sleep I have! Also, bright light is affecting me, as well as sound but smells are far worse. I feel sick at a whiff of cigarette smoke or other people's perfume or aftershave which never bothered me before! I feel guilty at my lack of enthusiasm after accepting friends invitations to meet up, especially if its an evening out, during the day I can still cope with but even then I feel bad at hoping they do the cancelling! The thought of my cosy pj's & fluffy socks is far more tempting! My nearly 2 year old granddaughter is one of the rare things now that I get excited about, Ruby has brought so much joy to our family - the best Christmas present ever! Anyway, I'm away back to writing my list of body complaints with the help of the links from yourselves, so thank you for "listening" and I hope one day soon I can be the one offering helpful advice to others. Have a good afternoon xx
Hello and welcome, just to say that there will be a record of the GP you saw on your medical records so no need to play Guess Who with the receptionist. Wishing you all the best. Lou xx
Just to second what others have said, it definitely does help to make a list of your symptoms, in case your brain turns to fog during appointments. I made mine on my notes on my "mini" electronic device and actually showed to both my GP and Rheumatologist.
I have definitely become more sensitive to smells - I take the bus when I need to get to places as I don't have a car, and sometimes have felt travel sick just because someone was wearing strong perfume, or eating something smelly.
I have all my meds , my calendar, and my notes on my phone because I kept forgetting everything!! Now I just show them my phone! Luckily I have found that most of the ladies in the office, nurses and my doctor have no problem looking at it or even on those days where I can't put two words together adding to it. They know if I just shake my head and hand them my phone it's a bad day. They will put my next appointment in or if given a new Med at it to my list. They all think it's wonderful and have no problem helping me stay organized!! My doctor has told me he wished all his patients did the same because it does help so much. I know they kinda looked at me at first but now they all love it. I have found out that fibro has a mind of its own! After over 40 years of having it I finally found a way to at least keep up with it for the most part!!! I know the fog is the hardest part for me. The pain has always and will always be there but I felt like I was losing my mind and that was hard for me. Thanks to my wonderful daughter for the iPhone and her saying now mom there is something I want you to do. Hence the notes and the calendar details. I have found when I go from one doctor to another they love the fact that I can look or they can look and see where I have been and what was added or even at times if they tell me something new I ask them to please make a note of it on my phone. Since I started this the doctors love it because they don't have to wait for me to "find the answers in the fog"! I would definitely recommend taking notes or have the doctor doing so. I have a friend that has a notebook she carries and has the doctor write in. It's helpful!
I am so genuinely sorry to read how you have been suffering and struggling for such a long time and I sincerely hope that you can find some resolution to this issue.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Anyhow, I have a list on file, don't remember where I got it from, might be useful to compare the two. I also used it for Dr'd, specialists, ESA, DLA etc. Very useful 
NEWBIE
TMJ diagnosis 
Pain management on NHS? Doctor said no!
Newbie
