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Cathy-M
#1 Posted : Wednesday, October 23, 2013 10:01:22 AM Quote
Rank: Newbie

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Joined: 9/25/2013
Posts: 3
Hi everyone. I am a new member and have been reading your posts for a few weeks now. I was diagnosed March 2012 but probably had RA for 2 yrs. I was doing ok till I tried to come off the steroids in June this year. Went back on them and things improved but Sulfasalazine was added to the Methotrexate and steroids about 3 months ago and I really haven't been right since. There isn't a lot of pain but I am getting slower and slower. Walking up or down a slight incline makes my legs feel heavy and I feel as though I am dragging them. I don't feel in control of my arms or legs. It's like they don't belong to me. I am getting really low and crying a lot. My rheumatology nurse told me at the outset that I would be able to get back to doing all the things I used to do. I don't think I have ever believed her and I certainly don't now. Was this unrealistic? One GP offered the very helpful advice 'you have a toxic illness that's treated with toxic drugs so what do you expect?' I came home for lunch on Monday and fell apart and haven't been able to go back to work since. A lot of other life-changing events have happened in recent years too and when I feel exhausted they all come crashing back in again. I know I need help and am seeing the doc later today but I don't want any more pills. If any of you guys can help me to get to grips with this I should be most grateful.
Paul Barrett
#2 Posted : Wednesday, October 23, 2013 10:08:33 AM Quote
Rank: Advanced Member


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Joined: 4/24/2013
Posts: 703
Location: Hexham
Hi Cathy,

Oh dear, you are in the wars aren't you? Does the heaviness in you legs extend to the rest of your body? Because fatigue is a common component of RA and if it hits hard it could produce the symptoms you describe. In truth it's unrealistic to promise people that they will be back to normal as, unless they go into remission, there will always be some symptoms that limit what you can do. But that doesn't mean that you are destined for a life of constant pain and limitations - it all depends on your treatment and they can take up to 6 months or more to take effect.

It's really good you are going back to you doctor to explain how you feel.
Paul Barrett

Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)

Enthesitis (2012)
Ulcerative Colitis (1990)
Rebecca D
#3 Posted : Wednesday, October 23, 2013 11:06:15 AM Quote
Rank: Advanced Member

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Joined: 12/4/2009
Posts: 242
Hi Cathy

I am sorry to hear how you are feeling but it is normal for someone suffering so much with R.A. Coming to terms with this illness takes a long time ( I am still trying to get my head round it after 13 years) and you need lots of help and support along the way. Have you thought about asking your doctor to refer you for some counselling? I never had access to this when I was diagnosed 13 years ago and wish I had. This disease is so life changing, it affects every aspect of your life and everyone around you. Emotional support is just as important as drug support.

Getting the combination of drugs right is another challenge, you need to communicate exactly how you feel to your Rheumatologist so they can put on the right track. Remission is possible but it all depends how you respond to treatment. Have you seen a physiotherapist? R.A affects muscles as well as joints so heaviness in the legs is common.

I hope your doctor is understanding, this is such a misunderstood disease, best of luck.

Best wishes
Rebecca
jewelsh
#4 Posted : Wednesday, October 23, 2013 12:23:09 PM Quote
Rank: Advanced Member


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Joined: 9/15/2013
Posts: 125
Hi Cathy
Sorry you are feeling so bad at the moment

.I agree with everything Paul and Rebecca have said but would also add that Sulfasalazine,though it helped for a short while, actually made me feel VERY low and depressed and have heard of others who can't take it for the same reason.

Hopefully your GP can advise you on that one.

Take care and don't be too hard on yourself

Julie x
suzanne_p
#5 Posted : Wednesday, October 23, 2013 3:36:02 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 8/25/2010
Posts: 1,289
Location: Buckinghamshire
hi Cathy,

welcome from me,

sorry to hear you are struggling .. it is very common to until your RA get's under control, which can take a long time ( in my case 18 months ) they weren't very helpful words from the GP to you were they.

i felt like i'd been hit with a sledge hammer when diagnosed and just burst into tears in the Consultant's room, i then had a lot much needed support from my GP, Consultant, Rheumy Nurse and NRAS Helpline as well as family. so don't be afraid to ask for help it is out there to help you come to terms with it all.

sometime's an anti-depressant can help with a chronic condition, even for a short time, as you say you've had other life changing events to cope with so no wonder you are feeling so low.

i hope your trip to the Doctor's is fruitful, do let us know how you are.

Suzanne

Kathleen_C
#6 Posted : Wednesday, October 23, 2013 4:11:02 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/3/2009
Posts: 1,689
Location: Durham
Hi Cathy, and welcome to the forum - but sorry you are having such a tough time.

RA has so many strands, and I sometimes think that not enough attention is paid to how terribly debilitating the fatigue is. This isn`t helped by the amount of medication we have to take, which is very much a process of trial and error until you find the one which works best for you.

Clearly, your GP needs to attend a course on how to speak to patients with a chronic illness - it`s support you need, not casual throw-away remarks like that.

I was already retired when I was diagnosed, almost 8 years ago now, but even so, I struggled terribly in the first 18 months, often in tears of pain and frustration. Luckily for me, my own GP was fantastic, and helped preserve my sanity while I struggled to come to terms with the limitations RA imposed on me. I also have a very good rheumy team, and am wondering if you have access to a rheumy nurse? They are a very good port of call when things are really bad. Oh sorry, just noticed you do have one - call her again and tell her how you are feeling.

I think rushing back to work is the last thing you need right now - rest and being kind to yourself is more important. As for your nurse being realistic/unrealistic, it`s important to believe that there is indeed light at the end of your particular tunnel : there are so many drugs out there now, and one of these, or a combination of them will be right for you. Once your RA is under control you will see a huge difference in your quality of life - my "magic" potion is Humira. Prior to that I was in a wheelchair for all but the shortest of distances, and I don`t need it now. Try to look no further than one day at a time - easier said than done, I know.

Take care, and do keep posting as we`ll do our best to help.

Kathleen x

Cathy-M
#7 Posted : Thursday, October 24, 2013 8:34:21 AM Quote
Rank: Newbie

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Joined: 9/25/2013
Posts: 3
Thank you all for your replies. I phoned my rheumatology nurse again and got the usual answer machine and will expect a reply at some point so then decided to phone one of the RA nurses at the main hospital. I got an immediate response and I have been told to stop the Sulfasalazine as other patients have reported similar problems. I then saw a new GP at my practice who was lovely and listened. He agreed about the SSZ and has recommended CBT and referred me for counselling. Even though in essence nothing has changed physically from yesterday the future feels much better now. Everyone has listened, given very good advice and although I know that there is still an unknown road to travel at least now I have a map and a support team! Thank you again.
Cathy
Paul Barrett
#8 Posted : Thursday, October 24, 2013 10:28:27 AM Quote
Rank: Advanced Member


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Joined: 4/24/2013
Posts: 703
Location: Hexham
Cathy-M - Well done you. I hope the CBT works for you, it's certainly helping me
Paul Barrett

Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)

Enthesitis (2012)
Ulcerative Colitis (1990)
Rebecca D
#9 Posted : Thursday, October 24, 2013 11:56:07 AM Quote
Rank: Advanced Member

Groups: Registered

Joined: 12/4/2009
Posts: 242
Hi Cathy

Well done for making yourself heard and listened to. Best of luck with the CBT, I am sure it will help you get back on track.

Love and best wishes
Rebecca
lisamcb
#10 Posted : Thursday, October 24, 2013 4:46:49 PM Quote
Rank: Advanced Member


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Joined: 3/8/2013
Posts: 144
Location: Dumfries
Hi Cathy

I have not had personal experience of Sulf but am glad you were able to get that issue resolved as on top of everything else you do not want to have to deal with a drug that is making you feel worse instead of better. I would be very interested to hear how you get on with CBT as I suffer terribly from anxiety which is a lot worse since being diagnosed with RA in March.

This forum is a lifeline as we all know what each other is going through.

Take care.

Lisa x
lisamcb
#11 Posted : Thursday, October 24, 2013 4:46:50 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 3/8/2013
Posts: 144
Location: Dumfries
Hi Cathy

I have not had personal experience of Sulf but am glad you were able to get that issue resolved as on top of everything else you do not want to have to deal with a drug that is making you feel worse instead of better. I would be very interested to hear how you get on with CBT as I suffer terribly from anxiety which is a lot worse since being diagnosed with RA in March.

This forum is a lifeline as we all know what each other is going through.

Take care.

Lisa x
suzanne_p
#12 Posted : Thursday, October 24, 2013 7:26:48 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 8/25/2010
Posts: 1,289
Location: Buckinghamshire
hi Cathy,

glad to hear things sound brighter for you now,

it'a long path to getting sorted with RA, i hope things work out for you soon,

Suzanne
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