Newbie

[Pmr650]

Hello,

I am new to RA diagnosed in April, this year, I have had loads of problems, with suspected Lymphomas negative thank goodness, and problems with DMARDS going back onto Sulfasalazine liquid this week, had to come off because of being ill with horrible cold! I seem to have constant Flare Ups! at the moment and have become very lonely locked away indoors most of the time. I always seems to be ill at the moment, so frustrated and unhappy. My rheumatology are alright, but don't really listen, they constantly prescribe Steroid injections, which give me Ocular Migraines, does anyone else have these! So horrible and scary, especially if your out! Haven't had migraines since I was really young! RA has left me isolated, lonely, very Anxious and Scared. I'm having CBT some days I feel like giving up!

[Hidden]

Please don't give up. I too am unhappy and frusterated with this disease, I think everyone who has it is. The only thing that keeps me sane is that I have to believe there is a combo of meds that will put it into remission. They just haven't come up wih the right mix for you yet.

Always feel welcome to spew out your fears, frustrations and your achievements on this site. The people here are warm and caring.

I wish you well

Sue

[Pmr650 in reply to Hidden]

Thank you Suzannedale, for your reply, it truly is the most horrid thing ever! I have it in my Hands! Which has meant I cannot do my Job, I'm a Cake Maker/Decorator...very upsetting as I really enjoyed it. Have only worked twice since the RA, started. Your right it's all about the Meds mixtures..I've been on two previous to Sulfasalazine, terrible side effects! I'm really Drug sensitive to everything it seems, I'm only on Child's Doeses at the moment. It does Scare me some days, how stiff I get, probably not helped that I have peripheral neuropathy in my legs and have had for 8 years! Caused by GP missing my Penacious Anemia, to late to reverse once diagnosed. I re taught myself walking, cycling, dancing a bit! Then RA arrived and now I'm being tested for Celiacs! Never stops! I am trying to stay positive just wish I could have one day without the Anxiety or Tears! Thank you again for your kindness x

[Hidden in reply to Pmr650]

You've had a rough time. I know what it is like to suffer in silence.

I was diagnosed with MS when I was in my 20's, before any meds where invented. I was in a wheelchair and was blind. I was so terrified. My baby was 18 months old and my hubby was working a minimum wage job. We had no help, my hubby had to work inorder to pay the rent. I was in tears..,For some reason, I was one of the "lucky" few MS sufferers who took a benign coaurse of the disease. Though at the time there was no way of knowing this....I guess this is the reason why I hold up such hope now with this RA diagnosis. I keep telling myself that they have drugs for this disease.

[Pmr650 in reply to Hidden]

So have you! My goodness how awful, for you yes we do have to hang I there hoping we will go into remission soon! Shocking number of young people at my clinic! Equally loads of Middle aged and elderly, all getting on with it, mostly well established on their DMARDS, my Rheumatology Nurse calls these times hiccups! I wish, we all want to just be able to cope! I do, without the tears, fears and depression, it's brought to me, I don't have a Mum or Dad, and have estranged siblings, it's just me my hubby, and sons and daughter in Law. I'm going to be a Nannie for the first time next year and so want to be well enough to enjoy it, and get my youngest through his GCSEs ! Thank goodness for them. Your responses are comforting and I am truly grateful to feel the support. Thank You x

[Ali_H]

Hi PM,

I would just like to say be gentle with yourself and know that you are not alone.

Many of us here use therapy as one of several tools to help us adjust to living with a long term condition and the associated grieving etc that goes with such a life changing thing.

Being isolated from work and stuck indoors sucks... Thankfully I am now back at work and, in the past, I got my winter outdoor fix by wrapping up warm in a 4 season sleeping bag and resting on an outdoor bench in the garden on those sunny days... It definitely helped me feel that I was doing something positive to nurture myself.

All the best

Ali

[Pmr650 in reply to Ali_H]

Hi,

I am trying so hard to adjust and accept this uninvited relative that has invaded my life. I would love to be free again to enjoy my garden, and just to get out and about a bit more. I did manage a trip to the Garden Centre at the weekend, which was lovely, but painful, as always, and frightening, I have so little self confidence nowadays and very low self esteem, due to the weight loss I'm only a skinny bean normally but tall! That has been the worst and now they are looking into celiacs! Therapy isnt going very well, because of my previous PTSD after my mum passed away she was In Hospital for 6 months and I was there everyday. It was a very difficult and painful time. Thank you for your words of encouragement. I really appreciate it. X

[Hidden]

So sorry for the loss of your mom. My father passed away last month after being paliative for 2 & 1/2 years. The stress was unbelievable. I believe that my RA started because of this stress.

[Pmr650]

My heart goes out to you Suzannedale, I know how awful the loss of a parent is. I lost my Dad when he was only 63, over 22 years ago. I to believe my RA was caused by the stress I had after my Mum passing, and the dreadful time I had with my ghastly Siblings being so nasty and mean for a year afterwards. Something we are exploring at Therapy. Going to try and be more positive today! My pain levels low, but my Anxiety is high! Going to try and keep occupied and stop thinking to much, about what ifs! Have managed Hair and Make Up before 9:30 am today! Record for me! Need to get dressed before 12:00 would be good! Might try and do something creative today I write poetry and draw. Got to stay positive no matter what! X x

[npkb]

I am giving you a huge hug. Please don't despair, don't give up. There are thousands of us out here who know exactly how you feel! As an "old timer" - I've had the joys of RA for 40 years - I have been in the dark place you're in uncountable times BUT

1. Today there are many more effective drugs available

2. There will be many times when the disease goes into remission, or at least quietens

down to let you live - it WILL NOT ALWAYS be like this.

3. I can honestly say that until the last couple of years I have not been stopped

from doing anything I really wanted to do (I never did want to be an athlete!!)

THERE IS ALWAYS LIGHT AT THE END OF THE TUNNEL.

Yes, I've had replacement knees, hips, elbow, shoulder etc, but the result of each op was fantastic.

No, I haven't run and jumped for 40 years - but I have kept walking.

Yes, the housework over the years became too much - but hubby helps, and life is way too short to worry about a bit of dust

I did raise two wonderful children, now grown up - I now have the joy of two grandchildren

I did become a published author - which I'd never have done had I not had to stop working full time.

I do get lots of time to paint and read - which many friends have envied!

Please keep your eye on the light ahead, and do talk to your rheumatologist. Take a list of questions to the clinic. Do they have a help line? - my clinic has a rheumy nurse you can phone (during working hours, at least!) - if so, use it.

Never be afraid to ask - be assertive (but always polite - docs like it if you appreciate just how overworked they all are!) I may be lucky, but over the decades I've built up a good relationship with our rheumatology team who are brilliant.

Have another hug - and enjoy a hot drink, a good book or DVD and think of all those people having to struggle through the daily commute in the miserable pouring rain!!

[lorraine1972]

Don't give up your rheumy needs to work a little harder to help and yes its a waiting game for things to improve .Talk to your gp about anxiety and see if they can suggest anything xxx

[Sheila_G]

Hi. I really feel for you. It is very scary when you are first diagnosed and I am sure we all felt the same. Believe me there is light at the end of the tunnel and although I don't want to give you false hope, many people live a relatively pain free and normal life once on the right drugs. It does take a while for meds to be sorted and to find the correct one for you, there are so many of them. One word of advice, don't be drawn to all the scaremongerers, read all the positive stories. You will find lots of help on this site and the nras site. It really helps to be positive. Good luck x

[Pmr650]

Thank You so much all you Lovely Wonderful People, up until this week I was feeling very isolated and lonely with my RA! and very frightened, you have all given me a boost of confidence and a better feeling that I am not alone. Heartfelt Thanks. Yesterday was not a bad day entire day no tears! Have got up this morning to find my Bakers Cyst that ruptured in July has done it again, so have huge Hoof foot today and stiffness but will stay upright! Bless you All Kind hearted people x x