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Posted 12/20/2015 12:17 AM (GMT 0)
HI has anyone heard of a site called My RA Team ?
http://blog.myrateam.com
I have had links come thru on my facebook page it looks like it could be ok ,you know the more info we can get the better but I am always cautious with new sites . I am not promoting it or suggesting anyone use it. just wondered if anyone here has heard of it ?

Also while i'm on the subject of My RA I just got my last lot of blood results back and seems the combo of Methotrexate & Arava are doing something because for the first time in Years my CRP (esr) inflammatory markers are nearly Normal - yes sounds Good doesn't it But if they are down WHY am I still feeling So Bad and so Fatigued ?
you would think I should be feeling a little better

And I Wonder if anyone else has this embarrassing issue - incontinence
I had a few incidence but took them as one off's but it has been increasing to the stage where I need the "lady pads" every night (it is worse at night) and I use them if I am going out somewhere "just in case"
Mr Dr is sending me for a CT Scan Tomorrow to see if I have some spinal cord compression as I do have a lot of back problems ruptured disc's and Degenerative Disc Disease, a few years ago I ruptured a disc and was paralysed down right side could not walk for 6 months it slowly got better but I still can't do certain movements eg kneel down or wipe my feet on a mat , so it could be back related but might also be RA or Diabetes related Don't Know

Gosh this has turned into a Ramble hasn't it Sorry
Posted 12/20/2015 5:01 AM (GMT 0)
Hi BadDay,

I haven't seen this site before, did you sign up for an account yet? I agree with you. The more resources the better and its always good to have communities to be able to share with when we are having a tough time.

Sorry to hear you are still having lots of fatigue, I am in the same boat. I don't know why some meds seem to work well for swelling and inflammation but hit us so hard when it comes to fatigue. Im just wore out ALOT and Ive been falling asleep at my desk at work :( Its horrible and I feel bad but I get so tired I just doze off. I am about to change meds after the holidays and I sure hope that it works.

As far as the incontinence goes I wonder if that is a Lady thing? Some of my relatives have had this happen after they went through menopause, I think that they all think it was related to having kids.
Posted 12/20/2015 6:17 AM (GMT 0)
Hi Don thanks
actually after I posted this re incontinence I did feel a bit embarrassed and wondered if I should delete it but then I thought maybe someone else is experiencing it,
I don't know if it is a menopause thing as I went thru early menopause due to hysterectomy over 25yrs ago (I think I was about 29) and wasn't able to have kids. so that rules that out I guess !
and have only had this for the last few months,

Sorry you are Fatigued it really is a downer it invades every part of your day doesn't it, and it makes you feel like your a drain unable to participate in things,
I literally need to sit down and recuperate after I walk to the kitchen or make a cup of tea
and yes why don't they look more into it ,
my Rheumy was almost like well your inflammation is down you should be great now ??
i'm lucky I have a good GP he goes by how I feel not what my blood tests say

No I haven't signed up to the "myra" page i'm still considering it - I do think things over for a while it took me ages to decide to join here and I took months to finally join facebook idea
Posted 12/20/2015 7:58 AM (GMT 0)
I have not heard of it, but then again I am new to all of this. I go the RA on the 22nd to see if I have RA or just fibromyalgia. I swear I have it. I feel the joint pain getting better by just a bit with the prednisone they had me on for 2 weeks. And now that I am off of it I am back to severe pain again, but honestly I hate taking the prednisone it makes me feel so ill, like I am nauseaus all the time. I would rather the pain, well not really but you know what I mean.

I had a hysterectomy when I was 39 I am now 43 and lately I have to say I have been a little incontinent and it is so embarrassing to say the least. I work retail and when I bend and I do that a lot I leak a little and luckly the thin pads are enough right now. But I hate it. I see that you posted that you also have SVT, did you have surgery to correct it? I finally had surgery this year. I ended up in the ER with a heart rate of almost 195 last year and they finally caught it after almost 10 years of me telling them that I was not having a panic attack and it was much more than that. I was so very thankful that I had a great dr that Christmas morning, it sucked to be in the hospital during Christmas but I was so glad to get a real diagnosis after so many years of other drs brushing it off as just panic attacks. I had to be taken by ambulance on Christmas eve and I knew there was not a thing for me to be stressed or panicked about since it was the best day that I had had in over 5 years since I lost my mom and dad one after the other due to early onset alzheimers and lung/stomach cancer.

Posted 12/20/2015 9:04 AM (GMT 0)
Hi geigertwins sorry you are looking at having RA even Fibromyalgia is no fun
I had SVT and was in hospital with racing 295 heartbeat they couldn't slow it gave injection etc then one of the Drs came and said try this 'valsalvor' I think that is what he called it where I clench fists and push down hard , after 3rd try it went back to normal rhythm then I went on medications and then about a year latter had a heart attack then went on Tambocor and that seems to be working so I only get bouts every now and then but usually can fix it myself with the valsalvor.
sorry you lost both parents close together it is hard. Hope you have friends or family for this time of year
Posted 12/21/2015 5:26 AM (GMT 0)
Don't feel embarrassed, I have had some of it too the last few years but I've always figured it was due to how bad physical shape I am in now days. I have tried to stay active over the years and for many of them I did and was in reasonable shape but these last few years since Enbrel stopped working I just have not felt good enough to do anything physical with any consistency. Its really frustrating because occasionally I feel good enough and I am able to but it never lasts. I've gotten used to being sick is all and I've accepted things as they are because its been this way for almost 3 years now and I can't change it myself.

I have just had to take a bit more time when I go. Sometimes when I think Im done Im not quite. I just figured I would throw that out about my relatives, I hope I wasn't being too forward.

My new Rheumy really made me realize that even though Im doing better Im certainly not doing as well as I could be. I just hope that making a med change will make a difference. It can be such a roller coaster with having hope then not over and over. I fear that if I get in a bad flare again I wont be able to keep working. I just have to leave that up to God, I can't handle it and its beyond my control anyways.

We had a family over for dinner this weekend who are the parents of one of my daughters good friends at school. She was recently diagnosed with RA at 15 years old. I just tried to be as positive as possible and let them know that anytime they need support my family is there. I pray that she doesn't, she is scheduled to see a Rheumy later in Jan.
Posted 12/22/2015 12:14 AM (GMT 0)
Hi Don So Sorry about your Daughters friend I guess the only bright side could be with the new medications getting it diagnosed early could be promising with treatment, at least they have you for support and info

No you weren't being forward any info is good info

I remember how scary it was when I had to give up work the day you realize you are a danger to yourself and others, I was a nurse so had to be physically fit and able to care for other people and the day I collapsed at a patients feet and had to go home I still thought I could keep going so cut back my hours to part time but I would work 1 day and literally be in bed for the next 2 days, so I stopped working but found I was in a whirlwind of bureaucracy trying to get welfare it took nearly a year and by that time I had used all my savings and had to give up my health care , So my advice is if you are looking at stopping work do it Before you need to just in case there are any problems with transition.
But it really is like loosing part of you and feeling So vulnerable because it is ok to not work because you don't want to but Knowing you physically Can't work that took time to accept
and yes I found each flare was a little worse and recovery took longer till it was full time flares and very little recovery
I now instead of having good days and bad I have bad days and worse days . smhair
but even in saying that, it's not a whinge it is just how things are and I really try to live my life without being that sick person when people ask how are you I just smile and say good thanks .
that's where this site is Great you can actually express how you feel without being judged or trying to keep up a pretence
Posted 12/23/2015 10:12 PM (GMT 0)
Thanks BadDay, I can really relate to you. I have had good days but more and more it is just shades of bad days :( I hurt everyday, rely on pain meds to get through the day and I am terrified of not working to be honest. Even if money were not in the equation its the thought of what do I do with myself. I just don't know.

I am just glad I made it this long since being diagnosed but I did have to change careers to do it and that was a pretty scary time as well.

I do have disability insurance through work so if things get bad again there is that. I've been trying to keep my debt to a minimum just in case.

Thanks for being Mod here, you are always a gentle and soothing voice amidst the chaos we all go through with this disease and I thank you so much for taking the time to be here. It is an amazing resource with some absolutely wonderful people.
Posted 12/24/2015 12:37 AM (GMT 0)
yeah Thanks Don I think you said it right; It is an amazing resource with some absolutely wonderful people.
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