Well my friends i am not very good at all today,i am sorry i sound so down. After the visit to the hospital on wednesday i am all in a quandry as now i don't know what is causing all my problems. My right knee which was operated on the joint is ok,but all the tissue around it is causing me problems. It is swollen and it is very sore and the ankle on the same leg is very swollen and sore again. My hand on my right side is very sore and swollen again. and i have a strap on it today thats how bad it feels. All my pain is down my right side and that is a puzzle to me too. If this isn't ra what the hell is it. I have had the x-rays on my hands and my ankle so we will have to wait and see what that shows. I am awaiting an mri on my hands as well.
I slept well last night and didn't get up until after 8am , so why am i so tired and down. I am waiting for a letter from my dr outlining what he wants me to do and he is sending a letter to my gp and when i get that i will make an appointment to go and see my gp. Obesity clinic yes i can understand that,but sleep apnea i am not so sure about that. My eyes definitely need looking at as they are swollen and sore at times. I also sweat a lot and i read somewhere that it could be due to the fibro,i didn't know that,but it would make sense. I wish i could that i haven't cried today,but i have and i feel all out of sorts and i am thinking i might just go and get my head down for a while and see how i feel when i wake up.
I hope you are all in a better place than i am today and long may it last.
Sylvi. xxx
Have put a smilling picture of my son to cheer everyone up after reading my blog..
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Hello Sylvi,
I'm so sorry to hear that you are feeling so down and in so much pain.
I guess that chronic fatigue is yet another thing that we have to deal with. There seems to be no rhyme nor reason behind why some days we feel so totally wiped out we can barely get through the days with our eyes open.
I do so hope they get things sorted out for you soon. I am way, way behind with blogs as my mobile broadband signal in the home here is so poor. Hopefully, I can catch up on a few before it goes down again.
sorry to hear that ur not feeling too good today or in other words c**p we all have these days and this is such a useful site to sound off on and know that others can understand your pain and frustrations. At least you still can see that things can still cheer you up by posting a photo of your son. I hope you feel better soon and send you a big cyber hug
I am so sad you are in such pain & worry as to what the hell is going in your body, This extreme fatigue does not help at all so I hope your sleep this afternoon will help lift your spirits. Hope you get more information soon so you get your head around what's going on.
Thank you ladies,Judy i wish when we was in devon i had known where you were, we would have come and seen you, i do regret that,but if we get another sun holiday we will come down and then we will see you.
Cris, i have to look on the bright side even when i'm having a bad day if i don't i can see that abyss getting bigger and i don't want to go there. My son comes home on the 2nd december and i am looking forward to that.
Alison, the fatigue is a real killer,it not only hurts and it pulls you down as well. I am still of the believe that it is ra,but what form i don't know. All the problem i have is down my right side and it always has been.
Love to you lovely ladies.xxx
Hi Sylvi,
Sorry you are having lots of problems again, lets hope you get some definite answers when the x rays and MRI scans are done and dusted.
My pain is no where near as bad as a lot of you lovely people but I do find I get very tired and I am having a few more problems with my right hand, thumb in particularly.
2nd December is not too far away now Sylvi and hopefully your son will cheer you up, you must be getting excited to see him after he's been away working on the cruise ship.
Hope you managed to get your head down for a bit and maybe you feel a little bit brighter now.
We are treating ourselves to dinner out today, so no washing up for me today - yippee!!!
Mary x
Not at all surprised that you are feeling down because you're in limbo & when you don't know where things are going it's always hard. For some reason I do remember some details about your illness quite clearly e.g. that you had a good few years when your RA was well under control. But I can't remember what was said at the last appointment about the RA i.e. are they now saying that you don't have RA at all?? Or might it be some other form of inflammatory arthritis?
You are probably not exactly in the frame of mind to focus on the positives at the moment, but the fact that your joint has healed well has got to be good news, though. And I wouldn't mind betting that the obesity clinic does you a power of good - you seem like someone who grabs opportunities with both hands & some structure and encouragement for losing weight should work wonders.
But obviously something is making the soft tissues take their time and then some .... that must be so frustrating. I'm glad to hear that these issues are being investigated & hope you get some answers.
Perhaps something good will come out of all this confusion, hang on to the thought that things might well take a turn for the better if your Rheumy is now having a rethink.
I get the distinct impression that you son will cheer you up considerably when he comes home!
Christina, i still have ra,but the inflamation i'm getting is not the ra as the bloods don't show that ra is active. Where is the sense in that. I will not give in to it,just having a crappy day with pain., Love sylvi.xxx
Mary, it one of those off days, you know what i mean. I have a strap on my hand today and as yet i haven't taken it off at all. I just start to accept that it is all caused by ra and the dr goes and move the goalposts. Its so not fair. Next thing they will be telling me that its all in my head.
I understand how you feel about them now saying it might not be RA, as you say just as you had started to accept the diagnosis, everything must be going round and round in your head.
Hopefully they wouldn't dare to suggest that's its all in your head, there's no way you would let them get away with that. Hopefully when the results come through they will be able to come to a decision as to what it is.
Hope you get a good nights sleep, I know it's easy for me to say don't worry about things but try not too.
Have you any nice things planned for when your son comes home?
Syvli I know I am new to RA, and you have had this for so long, but I no what you mean when you say that they will be telling you its in your head, I thought I was going mad for weeks, I saw so many doctors all of them gave me pain killers and told me to go home and rest, it got to the point I was so depressed not knowing what was wrong with me I starting crying in front of the doctor and she decided to do a blood test, the results were a RF of 689,
She then told me she needs to refer me to a rehumatioist to get it confirmed, So it then puts more doubt in your mind,
We all know our own bodies and know that something isn't right,
Hope you feel better after your sleep, its seems you have been though alot with this disease.
Don't we all,i'm no different to the others on here. I had a lot spell of good health until four years ago,then it went downhill from then. There is so much that happened to me i don't want to deppess you. I do try to stay positive as well.
i sweat a lot too and it's so embarrassing - it's not an over exertion sweat either because i wake up and my hair and cushion are soaking wet and i'm not too hot either.
one thing which helps me with my sweating is gabapentin.
i used to be awake, dressed and out of the house walking somewhere at 10:30 but now i'm usually lying in bed at that time gently moving my limbs trying to unstiffen myself.
it's such an exausting disease - both psysically and mentally.
Morning ladies, I have slept fairly well and i'm awake. My finger is very sore this morning and they still look like sausages that haven't been been pricked,my fingerprint is hot and sore. I am hoping that the letter comes from the hospital and then i'm goung to book an appointment at the drs.
I have fibromyalgia and i have read on one of the ra websites that i'm on that sweats are a symptoms of fibro so rattus try looking at that and see if that is the cause of your sweats.
I have tried stickng a needle in my finger to see if there was anything in there that needed to come out,but sadly nothing came out. I am not too bad in myself and i don't feel depressed which is a good thing at least.
Hi Sylvi, just catching up with emails as I have been away at sons, sorry to hear that your aches and pains are causing you so much agro, I was just wondering what pain relief you are taking? as when I was suffering the more I took the worse I got, so against advice I stopped taking the mixtures as It wasn't making me better so I thought It couldn't make me worse, I did suffer a bit but I think our bodies get so used to the combinations and concoctions that what they are supposed to do they stop doing,(does that make sense?) anyway like they said recently on the tv that we can get painkiller headaches; I completely understand, so now I only takes regular painrelief when I have pain and not all the time as recommended. I like you are so greatful for this site that everyone understands how difficult it is to get anyone to tell you exactly whats going on with our bodies when they are not feeling our pains and the test they make don't give the answers; what a complex condition we have to live with! But live we do, and you are a great person who encourages and supports so many with time and understanding, May the Lord bless you today and keep you uplifted and pain free.Love Carol
Morning Carol, I am in the process of reducing my drugs. Steroids are on their way down which to me is a good thing. There are others drugs that will be reduced in the next few months. I take loads of drugs and i have said time and again that i wish i could throw them all down the toilet. If it wasn't for this site i would be so alone as those so called friends say they are going to visit don't. With this site even though i don't see you all you are always there for me which i appreciate very much. love sylvi.xx
They don't give you the results at my hospital,but i will find out as i will ring my rheumy nurse and she will find out for me. John the knee is fine,its the tissue round the knee that is giving me trouble. I am going to ring physio this morning and see if matt is in today and i will speak to him about the pain i'm getting.
sylvi some of this can be whyat they call scar tissue i bet it feels like its a fatty substance round the bottom or top of the knee.
sometimes they can put ultrasound to breake this up on it and get some normal blood flow back to the area which helps ASK ABOUT SCAR TISSUE AFTER OPERATION.
id make a good doctor cos noone would leave my surgery without me finding out what was wrong with them.
all docs should be engineers before going into the medical section then it give you an iquisitive mined MUST FIND OUT WHATS GOING WRONG.,
have only just read your post, have been having a few probs accessing the site. Sorry to hear you're not having a good time. Just a thought, you said you're in the process of reducing your drugs - could it be that this process is causing these symptoms to flare up? Hope you can get some answers and a better day today.
Hi sylvi,Im sorry your having a tough time. I hope youve had a better night & have a better day 2day. Your son looks hot!! If only I was a few yrs younger ok a good few yrs younger!! Take care x
Caza, now that has made me laugh you saying my son is hot, He is still my baby and he has a girlfriend,that was sooo funny. He is not bad looking i agree.
I have had a good nights sleep,not sure how i am yet as i have only just got up. Yesterday was a bad day as well, and i had slept well the night before that as well. My hubby thinks its down to the weather as it is very foggy here today and it was the same yesterday.
Going back to my son,if i was younger it would be johnny depp or daniel craig any day.
I think i will tell my son and see what his reaction is and i will let you know what he says. Sylvi.xxx
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