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Rank: Newbie
Groups: Registered
Joined: 12/14/2010
Posts: 9
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I have just been for my 6 monthly check with my consultant and told him yet again about my fatigue. He always puts it down to lack of sleep and granted I am a bad sleeper but when I do have a good night I still don't feel refreshed. I always come away from my appointments feeling frustrated that I find it so difficult to communicate with him. He rarely looks up from his notes or gives eye contact. I much prefer seeing the nurse as I feel she listens to me and takes on board what I am saying or how I am feeling. Just needed to have a little moaaaaaaaan 
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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hi
Sorry to read that the consultant is so RUDE
I do think it sounds like me a few yrs ago when I got dx with fibromyalgia.
It meant for me I KNEW I had slept but woke feeling I hadnt!
Have a look here:
www.fibrohugs.com
At the rheumatic diseases hospital in bath they do chronic fatigue management as part of their inpatient programme
ask for a referral there....
if not- do try and get some progressive muscle relaxation stuff and guided imagery.
Sleep mohdoh (www.mohdoh.co.uk) and calm lighting etc can really help too.
Jennihow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 8/30/2010 Posts: 507 Location: Gravesend
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Hiya Dgordon... Sorry to hear that your consultant is that way , mine is very similar , however after going through PALS , i had a very quick appointment today 5 days after the final complaint). At this session he explained everything , did a thorough exam , gave me options and effects , booked MRI's and actually listened and explained . That might be a way forward . Ring the helpline and also read the leaflet Raise it with your Doctor or ask them to send you a copy. I am very concerned about that fibro hugs link as it goes to one big advert for an american product that costs $90 dollars a month , and the fact that the organisation are changing their name from a .org [charity and non profit] to a .com [commercial] website. Although i have heard that the site , when operating , had a good support element. Perhaps all the ads will go once the site has changed over. Rich :) "The difference between 'involvement' and 'commitment' is like an eggs-and-ham breakfast: the chicken was 'involved' - the pig was 'committed'."
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Well I m really pleased you had such success today with the consultant ! It s not good that you had to take this course of action, thank goodness it worked. Julia 
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Unfortunately fatigue is part and parcel of the RA process and there are no quick remedies, sad to say! NRAS produce a publication Fatigue - Beyond tierdness; well worth requesting a copy or downloading it from the link as it will provide much useful information. Rich gives good advice regarding your consultation, certainly worth considering PALS. Consultations should be a two way dialogue. I always find it useful to go to all my appointments fully prepared including a list of potential questions ... even after 23 years! I don't leave until I have the answers and boy have I learned a lot  Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 7/6/2011 Posts: 65
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So sorry to hear this- your Consultant doesn't understand all the (very genuine) symptoms of RA.
Try an second opinion if you're not satisfied- no one has to put up with poor care.
Love,
Amanda
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Sorry to hear that you are rushed through your appointment.
Fatigue is huge and I know as I suffer badly. I can have a good night sleep such as
10 or 11 hours and still wake up feeling that I have just had couple hours - yes it is
horrid
Rose
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Rank: Newbie
Groups: Registered
Joined: 12/14/2010
Posts: 9
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Thanks guys for all your replies. I was actually prepared for the appointment. I looked through Fatigue before tiredness and also Raise it with your doctor before I went. However its impossible to communicate with someone who says 'So how have you been?' and then sits looking through his notes or writing and not looking up at all. Perhaps I should have said 'Do you REALLY want to know how I feel'? and waited until he looked up.....but hindsight is a good thing and I'm not rude. I asked him some of the questions I had prepared which he answered .....without looking up. He said i needed to lose weight and obviously thought he had upset me because at the end when we stood up he patted me on the arm and apologised if he had upset me. He hadn't I think I was more stunned that he finally gave me some eye contact and had asked if I had any other questions [when we were stood up]. What was strange was the nurse followed me and asked me what he had said and asked if he had upset me. She was really probing. Then I went for a blood test and the nurse in there also asked some probing questions about him. My weight is an issue but I have an underactive thyroid which isn't under control despite being on a high dose of thyroxine. He had pointed out that it wasn't controlled from a blood test I had had done 6 months ago but no-one has told me....I despair at the NHS! ...This leads me to believe that this is probably a big factor of my fatigue. So I now have to go to the GP. I will look into the PALS thing as well. I spent two years before my diagnosis of inflammmatory arthritis being patronised and told there was nothing wrong with me before moving hospitals. I then got a fab consultant who was fantastic but moved away. He has been my consultant for a few years now and I don't have any rapport with him at all which feels like a hopeless situation to be in. 
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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I agree with Rich on this one. If you are not being listened to, it is time to contact PALS. Really hoping this will do some good.
Love Jeanxx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Oh dear! What has happened to fibromyalgia hugs?! Eek I have to say pals are no help here. White washed reply and they actually get the person you're complaining about lack of services from to respond... The best I've ever got is 'we're doing our best with what we've got!' It's upsetting and hard work for very little return in my experience how to be a velvet bulldoser
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Rank: Member
Groups: Registered
Joined: 10/13/2011
Posts: 12
Location: oldham near manchester
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hi all
been reading all your comments.i have seen 3 different consultants this year alone :( ..............its hard to get your worries etc through to them ..i may just as well go to a cafe and talk to the waitress as for rhuemmy nurses i read a lot of comments about how great they are ....yet again i have seen different ones every time i have gone .Its bad when u have to complain to outside bodies to get the treatment and care you need ......Hope u get it sorted dgorden
ann xxx
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Rank: Member
Groups: Registered
Joined: 10/13/2011
Posts: 12
Location: oldham near manchester
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jenni_b wrote:Oh dear! What has happened to fibromyalgia hugs?!
Eek
I have to say pals are no help here. White washed reply and they actually get the person you're complaining about lack of services from to respond... The best I've ever got is 'we're doing our best with what we've got!'
It's upsetting and hard work for very little return in my experience does anyone have any other sites for fibro ??? have just been diagnosed ann xx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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http://www.ukfibromyalgia.com/
Also put on new thread for when someone does a search how to be a velvet bulldoser
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Rank: Advanced Member Groups: Registered
Joined: 7/6/2011 Posts: 65
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Hi again,
It really is so disconcerting when a Consultant would prefer to look through papers or their computer rather than you!
I have had a couple of rheumies I felt dissatisfied with and we chose to ask for another opninion- I believe it is imperative that one is content with their rheumy, is able to trust them and listen to their advice. This illness is long term so one needs to develop a good relationship with the Dr- well, this is my personal belief, I suppose some people care neither here nor there whether they 'like' the Dr but this must be quite rare!
How about paying privately with a new rheumy for a one off consultation, using a recommendation to find one?
Love,
Amanda
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Rank: Advanced Member Groups: Registered
Joined: 7/6/2011 Posts: 65
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OH- forgot to add that my hubby has underactive thyroidism and this can make one SO tired, lethargic and sleepy- that definitely needs to be addressed if you're not on the correct dosage...{nor is he right now}.....
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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It really is a lottery as to whether or not you get a 'good' Consultant. I think it is very important that you have a Consultant who is very knowledgeable but equally important that they are good listeners and will spend time explaining things to you. It is difficult enough without feeling that you are not being listened to.
I would also like to reiterate what Amanda says about hypo-thyroidism. I have this problem as well as RA and I felt far more fatigue with it than I have had with RA. If you haven't had a test I would suggest asking for one as this alone can make you feel very poorly. As it is also an auto immune disease it can very often present itself in RA patients. I had this first and the RA followed several years later. Hope this helps.
Sheila x
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Rank: Newbie
Groups: Registered
Joined: 6/14/2011
Posts: 8
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Hi,
I was diagnosed with RA about 5 yeas ago and for the last two years my consultant has been telling me my RA was under control, but I was still suffering chronic fatigue which should have calmed down if my RA was under control (according to the RA nurse). My fatigue got a lot worse over the last year to the point I was napping nearly every afternoon but still got no help from my consultant.
I took matters into my own hands and read a lot of information. With my GP's consent I tried an exclusion diet to see if any foods were the cause and I found yeast, wheat and citric fruits had a reaction. Only after this diet did my GP tell me that anyone with an auto-immune disease is more likely to develop other auto-immune diseases. After going through everything with my GP she thinks I have developed a form of Coeliac disease (sometimes called celiac disease), and since cutting out wheat and gluten from my diet my fatigue has almost vanished and I have not needed a nap in an afternoon since cutting out wheat. (I am still on a waiting list to see a dietician about this after my GP referred me, after the diet)
Everyone is different so I am not saying this is what is causing your fatigue, but only want to highlight that it is too easy for some consultants to say 'well you have RA so that is the cause' without looking into everything properly. I have been told that some blood tests will show up Coeliac disease and have now found out I was not tested for this in the last three years! (although I have also been told a mild form of the disease may not show up!)
I am still on Methotrexate for my RA but since going on a gluten free diet my fatigue has almost gone and I have been able to stop taking the extra anti inflammatory drugs so I am doing fine now, unfortunately I hope I stay this way for a long time as I have lost all faith in my consultant.
Everyone with auto-immune diseases are completely different which is why it is sometimes hard to find the right treatment, you have to keep going and if you feel something is not right then make it known again and again until they listen.
Hope you feel better soon.
Karen x x x
(Hope this all makes sense as I am a bit rushed!!!)
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