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Rank: Member
Groups: Registered
Joined: 1/11/2012
Posts: 13
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I was diagnosed with RA in January this year and put on Methatrexate and Hydroxchoraquine (spelt wrong). Three weeks ago I saw a doctor at the Nuffield Oxford insteard of clinic nurses and after a few tests have a diagnosis of Fibromyalgia with progessive RA.
Anyone else the same?
Julie x
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Rank: Advanced Member  Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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Hi Julie - welcome to the forum but sorry that you have RA and fibromyalgia. I have RA and I'm on the same meds as you. I was diagnosed in May this year, and started out with steroids then the DMARDS kicked in. I've been feeling a lot better in the past month or so but it has been a steep learning curve and lots to adjust to. This is a good place to post questions and generally get experience of living with RA - no doubt you will get lots of replies very soon. Best wishes - Sylvia xx Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Hi Julie. Sorry that you have been diagnosed with that terrible duo. I am also quite recently diagnosed with RA (last September). Since becoming ill last year I've had a lot of muscle pain as well as joint pain. I mentioned it to my GP and she suggested that I might have fibromyalgia too. However I told her I didn't think it was this because my muscle pain doesn't occur in the 'tender points' that I've seen on diagrams about fibro. I know that RA can cause muscle pains so I think it's just the RA in my case. I'm on the same drug combination as you and I'm finding that on the whole it seems to be working. My 'lupus type symptoms' as the rheumie calls them, have improved and the RA symptoms are a lot better too, although I'm currently in a low level flare. I hope to hear from you again soon. Best wishes from Naomi, X
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hi julieNice to meet you. I was diagnosed with RA in 2008, been on various meds including TNF and
Rituximub. Non appear to have managed to make any significant difference. However when I saw my
consultant in April she though I may have Fybro as well, so I started pregabalin in June and take 150 mg x 2
a day. I do feel so muddled up about the whole thing. Not sure if it is muscle pain or joint pain. The fatigue
I get is awful and I still am getting pains in my feet especially , elbows, neck etc. I work just 12 hours in a
sales insurance work which I find isd Very stressful and I do think this does not help my cause . . .
How did you get diagnosed then for fybro, I didn't think there was a blood test ? How did they determine I
would be interested to find out.
Sorry you to have been diagnosed. Can I ask if you work, and if you do how do you manage.
Rose x
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Rank: Member
Groups: Registered
Joined: 10/13/2011
Posts: 12
Location: oldham near manchester
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hi julie firstly hi there and welcome ....awww poor you double whammy  i too have them both ...however after trial and error with meds i am now on pregablin 300 twice a day and amitriptylin 75mg ..and am pleased to say they help mainly at night to relax my muscles especially my neck... i am on same tabs as you for RA but only been on the meth for 6 week so no improvement as yet .... ann xxx 
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Rank: Member
Groups: Registered
Joined: 1/11/2012
Posts: 13
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Hello Ann & Rose
At last I'm not on my own although it's not great I know.
After having RA diagnosed in January this year and put on Methatrexate and Hidroxychloraquine I've been struggling ever since and have been to the RA clinic on emergancy appointments but only seen clinic nurses.
My whole body has just hurt from neck downwards. I just could not get anyone to listen or understand. In June they reduced my Methatrexate and put me on Amatriptaline. This unfortunately knocked me out too much that I was sleeping in the day at weekends as I was so tired. My GP took me off the Amatriptaline.
Went back in August to the RA clinic and saw a Dr this time and after talking about my symptons he did a pressure point test from my neck downwards and I had 17 out of 18 'ouches'.
From this he diagnosed Fibromyagia and progressive RA.
So tablet change again, now not on Methatrexate but on Gabapentin 300mg three times a day. Still on Hidroxychloraquine.
My pains are the same as you, my neck is awful, elbows with pains in the muscle area of the elbow, legs ache and walking isn't good, ankles are very stiff and painful feet. Hands/fingers also stiff. Fatigue is not improving at all.
I did do drawings of my hands, feet and a body outline to show where my pains were but the hospital didn't want them.
I have had to become semi retired from my job as a mobile hairdresser, I am working for a friend at the moment in his embroidery shop but he is selling so will need to look for something else. It's not easy finding a job that doesn't take it's toll on your body.
Keep in touch
Julie xx
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Rank: Advanced Member Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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Hi Julie - I really feel for you. I know how miserable it is to feel awful and not get through to the doctors - they just don't seem to comprehend at all. There's lots of stories on here with similar problems about getting a diagnosis. At least now you are getting treatment, although I'm so sorry that you have the "double whammy", as Ann said. I've no experience of fibromyalgia, but with RA the MTX and HDX do take ages to take full effect and it can be a long hard time getting to a point when the pain subsides and the fatigue seems to be a permanent feature, although less so when the RA is controlled. Do keep dropping by and if you have questions there's usually someone here who has experience of something similar. Sylvia xx Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hi Julie. Why don't you look to do bits online? There are lots of openings all you need is a Facebook page. That's easy to set up I'm jenni btw and I've got fibro and a few other 'friends' of the ra going on.... The fatigue is a killer Have you had a go at occupational therapy and energy conservation? The hospital for rheumatic diseases in bath have an excellent course in fibro management. Hope this helps a bit Welcome again Jenni how to be a velvet bulldoser
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Rank: Member
Groups: Registered
Joined: 1/11/2012
Posts: 13
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Hello again
I set up a facebook page for RA and fibro for people to help each other. There doesn't seem to be many with both.
I do have accupuncture which has helped my knees and hot stone massage helps my muscles.
julie xx
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Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hi Jami
Your explanation of your problems some 4 /5 posts back could be discribing me.
Everything you are referring to could be me.
It is nice to know that I am not alone. I only do 12 hours pw now, but even that is
12 hrs too much.
Keep posting
Rose
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Rank: Advanced Member  Groups: Registered
Joined: 5/3/2011 Posts: 36 Location: lincolnshire
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Hi Julie nice to meet you , but so sorry you've got this horrid horrid condition I have been diagnosed just under two years . I'm on methertrexate 25 mg and pain killers waiting to see what else I get put on this week as was on sulfasalazine but gave me headaches .Good luck and here is a great place to moan to ask questions or just talk to others who know what your going through ,chin up Julie we all here for you x x
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Rank: Advanced Member Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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Hi Julie - sorry to hear you're still feeling so poorly. Rest as much as you can so that the meds stand the best possible chance of doing their job. When I was in the worst stage, I found going to bed in the afternoon was the best solution - a complete rest and sleep for a few hours and then I'd be able to cope with the evening. And do try not to worry - easier said than done I know - but if you can focus on positive thoughts that will also help your body recover. Do you like reading? A good novel can boost your mood no end!! (and yes I have read all 3 Shades of Grey!! wink wink) Thniking of you - Sylvia xx Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Advanced Member  Groups: Registered
Joined: 1/21/2012 Posts: 388 Location: Powys
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Hi Julie, no advice to add, but hope you will be feeling better soon when drugs are sorted.
Its a very difficult change in health to cope with but stress free rest seems to be best way to go, very hard when you are used to being busy. I still feel guilty sometimes when I just rest in the daytime, but its a case of having to.
Try as I might to sit and absorb myself in a good book, like Sylvia says, and I do really love reading, I just can't help falling asleep what ever time of the day it is!!! Hope you have more success!
Best wishes Zena xx.
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