Well today was the day, I had my second Rheumatology appointment , the last one was last November when he ordered a MRI and physio for my wrists . ( not heard about physio)
I walked in well limbed in and almost fell over while trying to sit down. I have been hoping this appointment I would get some answers and help as the pain is unbearable and I have a couple more things going wrong. I now get blue motley arms and legs at times along with on other days bright red. I also swell up in lots of places
The first thing he said to me was " what are you doing here, why has the GP sent you to use weren't going to see you again!
Well after picking my self up from the ground i told him that the pains are now a lot worse and I am very stiff . Saying that some days I can't get up out of bed or off the bed or out of a chair. I had also taken the lovely pictures of my every colour changing arms, legs and feet.
The out come of this is he pushed on a few places and I say that hurt and after that was told , do you know anything about Fibromyalgia, as I have got it and its in the severe range.
Need to go to pain team, see physio, and have to have hydro therapy.
I need to stop taking morphine and go back to tramadol ( they did not keep the pain away enough to be able to move. I did ask about my swelling, colourful arms, legs and hands.
He said he had no idea why this was happening, but I had severe fibromyalgia . I said that someone had said about complex regional pain, and he said he could not "comment"
He told me its now up to pain team, if they want to change the name of what I have got.
He did give me a new tablet which trying to read prescription "T 6 lyrica 75mg twice aday"
And that was that, a few blood tests and that was me done and out of the hospital very sure I am never to be let in with this again as they " do not deal with either fibromyalgia or Complex Regional Pain Syndrome , so go away
I now feel really bad, can't stop crying, I was made to feel I had wasted his time and should go,away. Then a very nice lady who took my blood was so nice to me.
I just do t know what to do now with myself, the pain is so bad, I never sleep I just try to keep the house going and food on the table during the odd five minutes I can move. This really is no form of life, I want my odd life back, the one which i could do anything, I could work 50 hours plus a week in the best job every. I was a good mum. The kids had proper home cooked meals sitting up at the table, now like last night, I was asleep, so my daughter cooked her own tea and sorted the dish washer and cleaned the kitchen. I need to find a real and useful point to me being here.
Sorry for moaning, but as usual I am in pain sitting on my own watching telly I am so alone, I have no life, please someone give me advice on what or how I can change my out look
Thanks for reading
Caroline
Written by
Carolinee71
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Hi there I can empathise with you I have fibro and CRPS amongst other things.... Hard news to take that nothing can be done ... I have been there and come out of rheumys in tears ... The only thing you can do now is acceptance which is the hardest thing .... I have had 23 years to practice ... And my life is drastically different to the way I thought I would be in my 40s.... I no longer work ... My OH cooks the evening meal.. And all my hobbies have gone out of the window ... And I have to agree watching TV and reading does get tedious all the time.. I volunteer on here on my iPad and on good days I have a garden designed for me with raised beds...so I can potter.. I don't know if you can still drive ... I can't but qualify for a disabled bus pass , it sounds as though you could if you haven't got one already I am lucky the hail and ride bus goes right by my house and I have a mobility scooter so on good days I can get out... My family see me being ill as a bonus as I am always in if they need me.... Or something is being delivered...
Please try not to dwell on the rheummy most of them are out of their depth with chronic pain ... They like nice easy arthritis cases..... And most discharge as many people as they can back to their GP , so its certainly not your fault... The last one I saw was extremely nice but couldn't do anything for me my GP couldn't so he fixed me up with an orthotics appt .. They were very helpful with my feet and he got social services to come and give me aids round the house and then discharged me.... The two rheumys before that were pretty useless.
i have been to see the rheumy twice in two years and all he can say is physio and im like eh no as i cant stand anyone touching me. I get all the support i need from my gp who is great
It's true that many doctors don't know where to start with fibro - but that's no excuse for them to speak rudely or dismissively to patients, and I think you should complain in the strongest possible terms!
How dare some jumped-up medic make a patient who is already suffering feel worse, or tell them that they are wasting his precious time, when he gets very well-paid for being a disgrace to his profession?
It might be a good idea to make a strong complaint in writing, then to insist that your GP refers you to someone competent.
For God's sake don't put up with this sort of shoddy treatment!
How awful,you expect some sort of patience and understanding from a professional not treated like a second class citizen! Some people need to get down of their pedestal and start talkin to and treatin people how they would like to be treated themselves! I think a complaint should be lodged most definitely!
I think you will find many people on this site can relate to the way you feel. You have more than enough to contend with, with doctors of all people treating, or mistreating, you like this.
I think the 1st thing to do is to find the right medication to give you the best pain relief. I'm sure your gp would be able to help you with that. Nobody can function with pain levels like this. Also, need to look at improving sleep. Everyone needs good quality rest, and even more so with fibro. If your doctor can help with this as well, you will start to feel better.
It is clear how devastated you are by this condition and the impact it is having on your lifestyle. Although you may well find things improve, and many people have episodes, or 'flares', of worse symptoms followed by better times, things are unlikely to ever be the same again. That does not mean to say you will always feel so terribly depressed. In recent years I have begun to realise just how much my family love me, and need me! Not to run around after them, cook, clean and 101 other things Mums do for their families! It's never ideal, but my daughters say they would not change me for anything! They are more self reliant in many ways. Most important of all, if they have a problem, crisis, Mum is the first person they come to. They need me to be here.
I think what I'm trying to say, life will not be the same, at times tough going, but you still have a purpose. And for me, it's good enough!. I wish you well, keep posting to let us know how things go. Tulip xx
Thank you to everyone it has meant a lot to read your replies. I am going to try and get some sleep and speak to my GP who has been really great in the morning. Hopefully things will look a little brighter by then
Thanks a million it really has been helpful to read them
God love you Caroline, I can empathise, as I'm in a similar situation, my doc thinks just because I'm been 'seen' by a consultant for my multinodular thyroid, his hand are free of me, never mind my other illnesses I think now I will definitely change him, he thinks if he smiles at you, thats his job done, and the Rheumy I saw last January '12 took one look at my legs clothed in jeans when I was sitting/lying, on his couch, and said "I see you dont have Arthritis", I couldnt answer because I was moaning outloud after he poked me and said I'd chronic fibro, and he sent me out for blood tests and then the nurse told me I could leave, I thought I was going back into see him, talk about the pain I was in, I told my own doc but I might have as well as told a wall, take care hope you get some relief soon xxx
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I may have Fibro... 
Devastated 
Doctors who dont recognize fibromyalgia
