Maybe today is not a good day to write this but good days are getting few and far between if I dont do it now I never will this has taken over my whole life. I just need someone to please listen to me. I might look ok to you I dont look ill but inside I am doubled up in pain. If I would write a letter to my rhematologist/doctor this would be how it would start. So here goes.Evey day I get up I set the alarm early because I know that if I lie in things will feel worse I roll out of bed sometimes its like laying on a wet patch until you move you dont realise it is there but its there like it always is every morning with out fail. I walk if you can call it that more like a crab down to the kitchen making groaning noices I cant stop escaping. The first thing on my mind is not a nice cup of tea like it used to be its to make myself a hot water bottle so hot that my stomach and breasts are blistering over the scars already made in the past. My stomach that used to be nice and flat is now looking like I'm about to give birth. Actually after having three children already its bigger now than I ever was but after putting on 3 stone its not surprising I used to always wish to put on a bit of weight be careful what you wish for. My legs are also swollen especially my left leg I remembered reading someones post on here saying the same. The pain is always in my torso some days its in my back legs even my heels I read that too. I dont know where to put my body I sit and rock sometimes cry whilst I wait for the pain killers of longtec and 300mg pregablin take the edge off the pain. Thats if I'm lucky then I have another few hours before the pills stop working I think I have energy to clean the whole house. I get as far as one room. I used to get teased for always cleaning Thats another thing the severe fatique sometimes I sit in the kitchen in the middle of the night as I havent got the energy to get up I havent got the energy to even lift my arms. I am up and down most nights walking around the house even if I have slept the whole night I can sleep for hours in the day like i'm in a drugged sleep I cant wake up from yesterday was one of them days the sun was shinning and I was asleep most of it another day in my life gone by. I can even fall asleep with a hot drink in my hand. What I have tried explaining is its not just the pain, I feel really awlful like I have the flu but does he listen well he seemed to he made all the right noises in sympathy when I said I didnt feel they were taking me seriously because I looked fine to them and tried telling him how I felt. Come back in 4 weeks he said I walked out with my bit of paper to reception to make the appointment. She looked at computer and said I will just need to check with him as he is booked until may she came back yes he said thats fine. 7 weeks seems like 7 years when its every day. Once I had to wait 17 weeks my doctor told me to complain I did. The complaint dept said I will telephone you tomorrow so you have that little bit of light to look forward to tomrrow. He didnt phone back the next day he forgot lol. I went to pain management in feb we can give you a injection to help with 50% of the pain yes give me that I said anything that will help (I used to hate injection) " eh well you cant have it till may" he said. what a joke. Sorry if I sound a bit mad I'm normal really whatever that is I forgot. I was fine until I had a operation to remove fluid from my lung 18 months ago what was supposed to be a 2 day stay ended in 10 i woke up and couldnt breathe. They said it was pneumonia and pleurisy but I have been having these problems ever since. One other thing before I go I also have a area just under the right breast that is always tender since the day I came out. They tell you not too self diagnose but does it sound like I have it to you?. Thanks for reading.
Hi Tracey
Wow, poor you. Completely understand your frustration when professionals don't take you seriously. Totally agree that one looks fine on the outside but no-one understands the pains one carries day in and day out. Self diagnosis sometimes is a good thing but it's best to have other options ruled out. It's annoying to hear that you have to wait a long while to be seen to.
Can you not present yourself at A&E, I know you may be waiting for a few hours but at least you can get seen to. Have you complained to your local PALS team.
Without knowing what is causing you all this grief I wouldn't like to advise that you self diagnose.
Hope per you get some answers soon!
Easier said than done but you need to stay calm and positive and take a day at a time.
Totally feel for you, gentle hugs! x
Oh dear Tracey, poor you, I really feel for you. Much of what you say sounds very familiar. Have you seen a rheumatologist? That is the best way to get a diagnosis. You will find lots of support on this forum, so please don't despair. I need to go for my bath now my husband is home from work, but will look in again later. Hugs xx
Hi Tracy
I have battled with chron's and fibro for 20 yrs I really feel sorry for you.
in my past experience If you are waking up feeling hot then you really need to try and get your temperature down paracetamol and a cold compress on your leg can help with this..I hope you get an answer soon for your condition
take care
shirl x
Hi Tracy My heart really does go out to you. Yes I listened to your every word and believe me I am walking the walk with you. Nobody, but nobody, knows just how bad your pain is, but at least us who have this condition can empathise with you. I truly hope tomorrow is a better day for you and even though I am not religious I will pray for you. Take care and remember you can always pour your heart out on this forum. Warmest Mo
Hello Tracy
Your symptons are very similar to my own!
Like yourself i think the hardest thing is trying to get people/health professionals etc to try to fully understand the severity of the condition? i have been suffering with this wretched condition for 11years now! apart from the physical side of it, i just cannot accept the emotional misery it has brought with it?
I have been told so many times about pacing myself/ajusting my life etc. perhaps i am doing everything wrong? all i know is that unless you have the condition yourself it seems impossible to explain the pain and hopelessness to people.
Just to let you know that you are not suffering alone? how mad does that sound?
Really feeling for you Tracey...poor you precious..that's about all I can say here....it's easy to say less stress is the key to living with Fibro, when that's just what is accompanied with the rest of our issues...chin up...don't let it win...have a lovely day and God bless you...:-) xxx
Hi Tracey,
Sounds like you are having a bad time. Your symptoms seems to be
indicative of fibro. It is an awful condition and unfortunately one that very few people understand. Try your best to stay positive. When you get up in the morning focus on one thing, like getting washed and dressed. Once you have that done, if you are able, focus on your next task. If you
manage anything after that it's a bonus. Stop beating yourself up
because you are unwell and cant do the things you used to.
Acceptance is your
first step, you dont need a diagnosis or a title to know you are ill. Try
your very best to not allow this illness to become you. I do know how
you are feeling, but I get a sence of determination from your post. You
Will get through this.
Big gentle hugs to you
Regards
Claire
Hi Tracey, how are you feeling today? xx
Can relate to your post. I had to demand a referral to a specialist to get diagnosed. All of the GPs I saw never even mentioned fibromyalgia to me, if I hadn't brought it up and pushed for answers I probably wouldn't be diagnosed today.
many thanks for all your replies each one was very much appreciated and to be honest had me in tears at the support. I am at the moment in bed recoving from a overdose of painkillers which wasnt a intentional way to present myself to A&E as Bee70 advised (yes i did complain to pals they were the ones who forgot to phone back.),but hardly eating for several days as im sure you will all know when your in pain you dont feel like eating so living on painkillers wasnt a good thing to do. A&E where unable to do anything but the normal blood pressure check etc as I am still seeing the rheumatologist But they gave me a shot of morphine which at least gave me a couple of pain free hrs. My doctor has just left and has told me that unless the rheumatologist can give me a reason for the pain they will slowly have to take the pills away and refer me to the mental health In other words its all in my head. I have read post after post on here with the same symptoms I am getting I look them up after not before, we cant all be imagining it. On Friday at long last I have what I feel is my last appointment with the rheumatologist unless my last test shows up anything he gave me the impression that it would be my last appointment with him. My last hope before being thrown on the scrap heap is that I have a appointment with pain management they told me 3 months ago that they would give me a injection to help 50% of the pain so I am Pinning all my hopes on that to work. Every day I wake up and think im going to be cured today. To read that Some of you have lived with this for years is awful.
Ps I am going to the rheumatologist armed with a printed sheet of fibromyagia xx
Thank you claire for your lovely post. xx
Hi All hope you not in too much pain today.
I just wanted to update my last post Im not sure whether I should of started a fresh or carry on from this one Good news at last my scan showed as having something wrong (that sounds awful doesnt it?). Of course you will all understand what I mean how great it is after knowing there is something wrong and trying to prove it At last my doctor can see its not in my head and Im not a liar Or drug addict after all.
My last bone scan has showed something wrong with my legs, it still doesn't show why I always have pain elsewhere but it is a start. It has given the rheumatologist the green light to request a PET scan whatever that is ( will google hope im not going to turn into a ape). He said it is a very expensive scan and not given to everyone. I think he has a good idea what is wrong but needs confirmation? He does think I have fibromyagia which makes me feel I have a bit more right to belong here as I was feeling a bit of a fraud before! And I have a bit more right to reply to others as I know how it feels.However he does not think that is the main problem that fibro is along side whatever it is he has in mind. He wouldnt say at this stage exactly although he did say he has two things in mind one of them is very rarely seen in women as its normally a mens disease. That has left me a bit worried I had to go to loo to double check lol. Anyone have any ideas before I google that as well?. The second option he wouldnt tell me that either at this stage until after the scan. Then of course its going to be weeks before I get another appointment with him. But its a little light at the end of the tunnel. I know some of you have to wait years
Hi Tracey, that is good news! You sound so much more positive & 'up' than your original post. Please keep us posted with your progress. And don't be daft, feeling fraudulent, we are all here for each other. Take care. xx
A positron emission tomography (PET) scan is an imaging test that uses a radioactive substance called a tracer to look for disease in the body. A PET scan shows how organs and tissues are working.
you do sound a lot more positive Tracey..hope you keep us up to date on everything...thinking of you..try and be positive and stressless..easy said than done I know..it's just that Fibro feeds in our stress and gives us lots more pain and fatigue..I know what you meant when the dr mentioned Fibro...it's almost a celebration-phew...it's funny how nearly all of us at some time or another felt like it must all be in our head..especially when Drs would give us that funny look...have a lovely day...thanks for update....we really do care...be blessed..:-) xxx
Hi Tracey
At least you will get your questions and concerns answered fairly soon. Fingers crossed for you and hope you don't have to wait too long for your answers. Please do keep us posted on your progress and take care of yourself.
Hi all thanks for your replies. Its been such a help finding this site its like having friends at the end of the phone whatever time day or night it is. (Its now 3.30 ). I did find the sleepless nights the hardest its very lonely when your the only one awake but since joining the site I spend most nights now either looking at peoples posts or writing my own. Its a help knowing there is somebody somewhere going through exactly the same thing does that make sense?. I try not to talk about the latest ache or pain with my family now unless its really something I cant hide as I noticed they sometimes get a glazed look in there eyes when I tell them how im feeling or they avoid asking altogether as they know that they will need at least half hour for me to get through the list with probably new ones added, so instead although I dont get that many I tell them when Im having a good day instead the relief on there faces is hard to hide . So its nice to be able to post and get things off my chest, or just chat about how things are going at the moment. I expect you can all relate to this when I first become ill nearly two years ago I had lots of sympathy, flowers, get well cards, "sit down I will do that" kind of stuff but the longer it has gone on people tend to lose interest and who can blame them, I think I would probably be the same. A example of this was the other day I was sitting on the kitchen stool clutching a hotwater bottle to my chest to try and ease the pain groaning at the same time and pretty much nearly in tears. My partner was sitting beside me playing a game on his phone and my teenage daughter was every now and then shoving her phone under my nose wanting my opinion of what hairdo to have done next lol, they were waiting for their tea, the dogs were waiting for theirs and my eldest daughter sent me a text asking if I could look after the grandson overnight. Life goes on.
Thanks hun x
Thanks hun x