I'm getting so sick of this disease! i have had 3 flare ups in 4 weeks, the first was my legs? all the muscles in my legs i got up at around 7am and by 10am i could not even stand up as i was in so much pain with it, so i had to stay on the sofa all day and the pain was nothing like have had before i ended up taking 4 pain-killers at once it was that bad, the next day was better but still in pain but no where near like it was the first day, i was just about getting over it and then my Foot started to flare! but this started over a number of hours and by the end of the day i could not walk i was in so much pain! so i take some pain-killer to go to bed with and the next day, it was not much better so i go and see my GP as the pain-killers i had was not doing anything, he give me some Tramadol 50mg, and wanted me to have an X-ray, so i go have the X-ray i told the woman who did the x-ray that i have RD and once i had it done she went away and looked at it, she came back and asked me who i was under! i asked why and she said he/she needs to see this, i know my foot is getting bad but what if it gets to bad? what then.... so i come away from there feeling very low, the next day the pain started to go and by the 3rd day still a bit of pain but it was the pain you could put up with ( i'm sure you all know what i'm saying!) that pain we live with, and then to cap it all of last night i start to get a niggling pain in my shoulder! and i think back to when i had this before and i know whats coming, well today i wake up around 7am as the pain is to much, its like someone has got my arm behind my back and will not let go, omg this pain is so to much to take & and its only the first day and this one will go on for 2 or 3 days as i have had this before, i can move the lower part of my arm as long as i keep the top part of my by my side but the top part is a no no! this pain is the worst pain apart from that leg pain i had, i only have to touch my shoulder with my finger and it send the pain level through the roof.
I have a appointment to see my consultant tomorrow! i also have hydrotherapy tomorrow but i don't think i can do that now,
Just so sick of RD just so low and depressed! most of the time, never in my life have i been this low
Thank you all! for being there and understanding!
Hope you are all doing better then me, and i don't wish this pain on anyone!
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marcus6
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I'm so sorry to hear what you are putting up with at the moment.....the pain is just horrible isn't it? I had the shoulder pain in both shoulders, like you I couldn't move my arms away from my side. Rheumy gave me steroid injection into the worst one and general steroid at the same time. Thank goodness it helped and was able to move again. Not long to wait till your appt tomorrow and hopefully they will sort you out with some steroids and review your treatment. It all takes so long though doesn't it....try this drug for 3 months, then when it hasn't helped increase the dose and wait another 3 months .........maybe whatever they decide tomorrow will be the magic one for you......we just have to keep on hoping. Take care and good luck with your appointment x
Like you say! every 3 months try this then try this, and so it goes on, yea thank god i got my appt tomorrow,
I will have to miss my hydrotherapy appt as there is no way i can do that,
Thanks
Hi Marcus. How long have you been suffering from RD?
I'm newly diagnosed and RD came like a typhoon. It hit hard! I think when the feet are affected it's the worse because the feet are out foundation and we depend on them. It's hard to deal with this pain but the feet are the worse. I am happy to say my feet are no longer giving me a problem. I don't know why but they're no longer swelled on the side and on the top however I still have other ailments keeping me from working at the present. I hope to get back to work soon.
One thing that I did recently is taking in a 1/4 cup of unfiltered raw apple cider each day. I've upped my dosage of Tumeric pill supplements. Both are natural remedies that I've added to my daily meds. My feet were on fire and it's totally the opposite at this minute! A friend suggested buying some Tumeric tea off Amazon too which I'm going to do today.
I know this disease is excruciating most times. I'm right with you and I hope you feel somewhat better today. This disease had taken away my independence. I feel helpless at times and feel like how can I deal with this the remainder of my life. Everyday is a struggle for me and the disease time wise is in it's infancy stage. I hope the pain gets better. I absolutely hate pain medication. I will suffer because the side effects are worse. I did like Tramadol to manage my pain but I threw the remainder down the garbage disposal because the side effects were awful.
I'm glad this forum let's us express ourselves as no one without RD knows what we are going through every minute of the day.
I have had RD now for just over 2 years, but i had to wait a year before they could put me on meds for my RD! as at the time i was having test done as i had something wrong with my Thymus? i ended up having an op to remove my thymus! but they could only take 80% of it out as it was wrapped around the giant Vascular & my heart, so until this was done they could not give me any meds, do for a year all i could do was take pain killers! for my RD,
I to had to give work up as i could not do it anymore! i was is to much pain each day, ( i was a plaster & wall and floor tiler) yea like you my RD hit me hard and fast, right now i'm fighting fatigue as i just seem to full asleep where i sit( i could be out or on the bus) last week i feel asleep on the bus and ended up back at the place i just come from! so now i set my phone to go of every 20mins But then saying that the only time i go out is if i have hydrotherapy or have to see Doc,
The only thing that swells up is my hands when they flare up, my foot never did or my legs, not sure why, maybe that's why i'm in so much pain when i have a flare up...
That's the hard part about RD is no one understands what its like unless you have it,
even when i went to the Doctors last week about my foot, he ask whats up! i told him about my foot and that i have RD, he then went on to say have you been over doing it "ie" walking to much or did you drop something on it, i said NO I HAVE RD, i'm having a flare up, and he went oh ok!
Thanks for your Reply! its good that i can come on here and Rant away, and to know everyone knows and understands.
Thanks for explaining and saving me from having to google thymus. Lol. Im glad you got your problem resolved. That had to be excruciating To deal with this for a year before you could start taking meds to treat your RD.
The podiatrist needed to be shot for asking you those dumb questions. Is the podiatrist able to do anything during a foot flare?
There is no way you you to be able to work with what you were doing. I have an office job and for almost 27 years in September and I can't even do that right now. I hope to make it to 30 years where I can at least do early retirement. I've always wanted to not work but not due to an illness that's debilitating. I really can't see me working the rest of my life with this disease. It's like everything has been taken away from me. Things that I loved to do I really can't do them anymore. It's depressing and I hope to be able to deal with it without any extra added meds for desperation. I don't like being at home sore. I wouldn't wish this on anybody.
The last two flares I had came with a parting gift of shingles. It can always be worse.
I do hope you get some relief from your pain soon. It's so wearing & have at times just sat & cried with the pain, frustration & just the feeling of not knowing what to do with myself or how I could help myself. I can't honestly say it's ever made me depressed, not how my mum was anyway I've never been as bad as she was thankfully, but it does get me down & I just take myself away from everything & hope I can sleep it off, when I can get comfy.
Hope all goes well tomorrow & let us know how you get on.
Thanks for that & welcome to us here. Here are a few words of encouragement just for you lol! It's never easy going at the start & there are many who do very well on meds from the get go, but because they're doing well don't tend to need the great support some do & need sites like HU as Marcus6 does right now. That's not to say we're all falling to bits. I'm generally pretty good with my meds for one but I find coming on here it is a great help whether doing well or not. I've learnt so much more about my condition & the ones associated with it & I was diagnosed just over 6 years ago. It's particularly useful for the newly diagnosed like yourself but don't panic if you read of some who struggle. Not every drug suits everybody & our meds can be strong ones so there can be reactions & this is why we have problems with our particular disease. It is unfortunate but sometimes meds to be changed if not efficient & it can cause frustration. We do rant from time to time but as we're all in the same boat we understand! You don't say just how long you've been on yours but the meds can take time to work & if given that time & they're not helping other ones can be either added to improve their efficacy or new ones introduced. I've had a few changes with mine but nowhere near as much as some members have had. Mine do need to be looked at next month at my Rheumy appointment as I had to come off a couple but not been as good without them so need to find alternatives. So don't worry about the future too much & enjoy joining in on here.
Just seeing IainM's post further down I really should have mentioned him as an exception to the rule where perceptions about people with RD are concerned. He posted yesterday he's intending to do the pilgrimage Camino de Santiago next year. Take a peek at his post telling us & you'll see what I mean!!!!
Since his first post, you'll see if your scroll further down his post page, I intervened & sent him a link so not only is he doing it he's now chosen the hard way on the north route through the mountains. Hope it doesn't come back to bite me!! He's a big chap & don't fancy my chances when he's done it & asks why the ---- did you ever send that link lol! Seriously though I admire & respect him tremendously. One of our friends who's done it, supremely fit & does the Swedish equivalent of the Tour de France, did this route & even he said although he wouldn't have taken the "easy" route (!!!!) it was some experience & now he's done it that's it he's not doing it again!
When I referred to my feet not giving me a problem anymore I should have said at the moment! We all know it's bound for them to swell up at anytime!
Hi Marcus, I have just went past my 2 years since I started with symptoms..it took 9 months to properly diagnose me after getting bounced around being told there was no chance I had RD. When I got a positive diagnosis my whole world just seemed to fall away from me, depression and a realisation that I wasn't going to be able to do the things I used to..having spent half my life in the Army being physically active all the time this was a serious blow to me, but I thought hey it isnt that bad as it was only my fingers that hurt..and then it started in my hands, my wrists, my feet, knees, jaw, neck and shoulders..it took around 6 months for the meds to work and then I had a 6-7 month remission and felt magic..then since January I have been the same again..flaring all the time and thinking jeezuz when is this going to give up!!!?..just last week I was in turmoil with the pain and on here crying with pain as I typed and the support and understanding was incredible from everyone who has been there before and going through the same. But no sooner had I flared the worst of it had passed, not 100% but much better I just cant seem to get rid of the burning sensation in my hands and cant shake the fatigue but I am managing..I was blaming the flare on that I am currently off my meds due to low platelets...now Im thinking Im getting better because Im off my meds lol I dont know which way to turn lol..I really hope tmrw you wake up much better and kick on from there...I am due to start on anti tnf next week after putting it off for months...I think the best thing fio me recently is getting my positive mental attitude back and instead of dwelling on what used to be I now accept this horrible beast inside me but it doesnt define me one bit....as I have decided to walk from France to Spain next year 500 miles for Arthritis UK..hey I might not be able to walk when it comes round lol but I am making the plans for it and looking forward to it...I really hope you get over this rubbish period and get back on top Marcus and beat it back down..keep positive and push through and good luck tmrw
just seen you are newly diagnosed also..this site is an absolute blessing everyone is so nice and understanding I cant thank it enough..hope you are doing better and getting through it all..its all a lot to take in early on
Thank you. This forum is wonderful. I need to learn the in and outs of this disease. Yep I have a diagnoses but there is so much involved with this disease. You get very little time to ask questions during your appointment. Having an open and honest forum to listen to RD veteren's is great free therapy. thanks Lain.
Yeah its really helpful, I'm still learning the ins and outs also..the more I go on though the more I just go with it, do what I can when I can, and make sure I get everything in at my Rheumy appointments, its your time to ask what you want..deffo dont let them chase you out..its your time to get answers..and if you dont get them there are always plenty answers on here.. the one thing I always remember is there are no rules to this disease..everyone is different..hope you get sorted soon
That's the hard part about RD! i'm finding it hard to take as i can not do the things i used & loved to do, i had to give up TA and that was so hard for me! my head was saying stay! but i knew i body could not take it!
I would love to join you on that walk! if i'm upto it, i was thinking of doing something like this once the meds start to work, i just feel that when you tell someone you have RD/RA they just think you got Arthritis, bit like the guys i use to work for i told them that i have RD, and one of them turned round and said yea i got Arthritis in my hand ( i'm like ok! lol) everyone thinks its just Arthritis?! they just dont understand, it needs things like this walk you are doing to open everyone's eyes to what RD/RA is,
I will let you all know how i get on tomorrow, the last time i seen my consultant he was talking about putting me on Anti-TNF so will see tomorrow.
Hey Marcus, yes there needs to be more exposure and understanding of RA/RD unfortunatley you are going to get that answer a lot...I just agree with them now and smile..Exposure is lacking so hopefully the more people do the more people will understand...Its one of the hardest thibgs to deal with, knowing you will never be the same again, but we learn to cope and accept...the good thing about here is everyone understands so its a good place to vent and release some tension..I cant praise this site and the people on it enough...please do let us know how you get on, I really hope you get some pain relief and meds sorted soon
Hey you guys. Do either of you say RD instead or RA? I've never had a problem since using it only positives. Maybe I've just been fortunate but no-one has immediately reacted with the stupid "I've got thats" since.
Im RD all the way I was RA but not now..it does stop the usual Ive got that..I got into a convo the other day and was asked whats RD snd stupidly tried to explain and RA slipped out..cue...Ive got that in my knuckle...I just smiled.
Damn, that's so annoying! I've not had that thrown back at me as I get the autoimmune card in quickly & they concentrate on that & disease. Feel sometimes like getting an explanation printed on a business card & then I could just hand it to them lol!!
Hello Marcus, it sounds horrendous at the moment, I can relate to this experience as remember how awful it was when my RD was uncontrolled and even the smallest movement was agony. Everyone has given good advice but just to add that even if you don't feel up to it I would really encourage you to go to Hydrotherapy. I dragged myself there to have it when I was having a flare and it really helped, even though I did fewer exercises than usual. Hope it goes well with your rheumy appointment tomorrow. All the best, Fran
Hi all thank you for all your reply's, its so nice knowing you all understand what its like, well good news is the flare in my shoulder is sub-siding still got some pain ,but no where like it was ( thank god!) as "francherry" said i think i will keep my appt for Hydrotherapy!
That's good news, especially if you're thinking of going to hydrotherapy. Hope it eases all your pains & you feel all the better for making the effort.
Well hydrotherapy went well! albeit in a bit of pain still when i come out, but over all feel better then i did before i went in, its 2.45 by the time i get out of there, and now i have to sit around until 5pm , so i go get a coffer and read the paper, then i go sit in the sun for a bit, look at the time and its only 3.15 (omg i'm thinking! my appt is not until 5pm) so i make my way back and i book myself in, hoping to get seen sooner, hehe it worked only had to wait 20/25min to see my consultant,
when i was in there he asked how i had been, i told him the last 4 weeks has not been good, told him about the flares, and he side steps what i'm telling him and went on to ask me! have the pain killers been working?? (now i'm starting to think he is not taking in anything i say?) I said no i don't think they are doing anything for me, and he moves on to check my joints "ie" score test! and he is feeling my hands, and he asks if it hurts i say yes! and he said well there is no swelling or heat from the joints! so he moves on to all the upper joints, he also checked my back as i have a lot of pain in my back all the time,
He then asked if i was working! and i said no, he said why NOT! can you not lift anything,( this got my back up!) , i said there is no way i can do my old job as a tiler and plaster as its to physical! i said yes i can life about 1/2 bag of shopping on a better day that's about it,
He has put me on 100mg PREGABALIN! i was on 75mg, and he is going to send me for a back scan,
as for my X-ray i had down last week when i had that bad flare-up! with my foot, i asked him about it and he said there is no RD in it?? he said its degenerative disorder! and we all get that<< his words, that's what he said, i just don't know anymore what to think of my consultant!! do i go and see someone new? or stay with him. i came out of there very low, it just seemed he had to be somewhere & wanted to get me out the door, or it could be the fact i'm only 43 and he don't believe what i'm saying to him, i just don't know any more, this is a kick in the b**s i did not need or ask for.
sorry guys! i'm just so fed up at the min with all this,
Oh no marcus, it's hateful when you have a consultation like that & little wonder you're feeling so low. It happened to me last visit but thankfully not with my named Rheumy &found it a shock as I've had nothing but positive consultations since being diagnosed with the 4 consultants I've had. This is another case of them needing to spend a day in our shoes. Has he always been this dismissive of you? If he has then yes, I think I'd be asking my GP for referral to another Rheumy. What I don't understand is his idea of upping your pregabalin & not questioning your other meds. I suppose you've to be thankful for him at least sending you for an xray & hope that shows something is amiss. My h suffers terribly with his back & though at the moment little they can do except but give him tablets which he can't tolerate (still waiting for the facet joint cortisone injections) everyone he's seen believes he has such pain. Your age should have no bearing on how he treats you, you're a patient with RD not just a person with a number.
Thats a pretty poor show fro your rheumy tbh, as my rheumy says just because it isnt swollen or red doesnt mean its not there!..everybody's RD is individual to them..sorry to hear it wasnt great and you are still down, just a thought have you thought about cbt?..I have had it for Combat Stress and also my RD..its a great way to learn about dealing with pressures of what you are going through and also helps with acceptance of what you have..its great to talk with someone who genuinley wants to help in a relaxed setting with no pressure at all..hope you get sorted either way very soon
This is the first time he has been like this with me! so i'm not sure what to do, i see how i am in the next 3/4 weeks, If i keep having flare-ups like i have in that past 4 weeks then i will be on the phone to see if i can get an appt, maybe on the phone to him anyway if this appt for X-ray/scan on my back does not get booked in soon,
Thanks LainM i have been thinking about that! but i'm not that good at opening up to someone face to face that i don't know, Think i will just talk to my physiotherapist as she has RD and she talks to me about it! and asks how i am each time i go, i find it easy to talk to her as she understands what its like ( you could say i got lucky having a
physiotherapist that has RD!)
Thank you all for being there! its so nice to talk to so many that understand!
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Four appointments in five days the other week.....
HELLO EVERYONE, I'M BACK!
