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Recently diagnosed with RA 😔 looking for support

Posted , 8 users are following.

michelle1901
michelle1901

Hi I am 35 , married with 3 children 2 older girls and the youngest a boy age 1. Since January I have been suffering with what I thought was muscular strain from exercising. I was wrong of course. I was diagnosed last week with RA after 3 trips to my doctors and then being referred to a rheumatologist. The pain originally started in my arm and wrists, then fingers, then ankles swelled up then my knees and now it's back in my arms again. I have so far only had naproxen, tremadol and 2 Steriod injections( one in my bottom and one in my swollen knee)which haven't helped really. I am waiting for my next appointment with specialists to discuss which medicines to try. I had a chest x Ray, blood tests and a foot x Ray all in one day. So the results of these should help them decide what to try. I am praying to have a day with no pain, stiffeness and swelling and to be able to look after my baby without help. Just changing his nappy, picking him up and dressing him is a massive struggle!

2 likes, 26 replies

26 Replies

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  • helen263490
    helen263490 michelle1901

    Posted

    Im so sorry. Its horrid and no one can imagine how just a simple task like holding a baby can be so painful and difficult. Everyone has there own experience. It took three months to be diagnosed and i was in agony. I have had on and off pain and flare ups for three years. In the three months waiting to see a consultant i used voltrol suppository. 100 mls in the morning and i was able to go about my day in very little pain. Ive also had no meat, dairy or caffiene for 3 months plus and even eating an ice cream yesterday i have more twinges today so i think this is working.ginger and peppermint tea helped me to. I do believe the gut and diet play a massive role in RA. I hope some of this helps. Little steps are important.
    • michelle1901
      michelle1901 helen263490

      Posted

      Hi Helen

      Thanks for your advice-I don't know anyone to talk to who has this disease, my family are struggling to understand the pain I go through every day. They are all brilliant and help massively but sometimes I feel so alone as they don't understand and expected me to get better after the Steriod injections. What is a general day like for you now? It Takes me about 3 hours to get ready and start to feel more mobile. I would love to wake up without pain or stiffness. I haven't changed my diet really I wouldn't know where to start with that! I love my meat and dairy and coffee! 😀😀x

  • helen263490
    helen263490 michelle1901

    Posted

    Hi me to massive meat and dairy and needed my coffee first thing. Three months on im happy to be feeling better. I have done alot of research and especially in america its helped people. Im on 15g of prednisole its taken all the pain away but its temporary. Hopefully they will put you on a dose if steriods this can then sort the inflammation out. Be kind to yourself rest when you can and accept help.none of my extended family have this either xx
    • michelle1901
      michelle1901 helen263490

      Posted

      Hi Helen

      Can I ask have you put on weight with the prednisone? How long do you take it for as you said its temporary? I have looked into it a few times as a useful drug for RA but have seen so many people with swollen faces and neck and lots of weight gain. I have lost 2 stone since my boy was born and I am happy again at 10 stone 11. I don't want to gain loads of weight although I would love to pain free so maybe I need to be more open minded 😕 x

  • helen263490
    helen263490 michelle1901

    Posted

    Hi only second week but my husbands a doctor too and the consultant rhematologist i saw has done 41 years. He said i will bloat out and put on weight but to be pain free and its only temporary the swelling till it stops the flare up. I would rather have one drug short term than loads of drugs upsetting my liver. I think it depends what you want. I so wanted to be able to work, socialise etc could not have done that much longer on the voltrol. I think you should try a smsll dose and see if it gets rid of the pain xx

     

    • michelle1901
      michelle1901 helen263490

      Posted

      Hi Helen

      How much have you gained if you don't mind my asking? I don't mind a bit of weight gain. I am on holiday in July so don't want to gain too much before then. I have heard a lot about prednisone being one of the main Steriod treatments used in RA so I am willing to try it as I would love to feel free of pain and stiffness. Thanks

  • cheria
    cheria michelle1901

    Posted

    Hi, so sorry...everyone reacts differently to RA treatments, myself failing all except plaquinil, and must really take it easy on prednisone..but do take 5 mg daily with plaquinil to help keep flares down to about one a year. It took me about 2 yrs of trying the immune system treatments (methotrexate and biologics, and a sulfa drug which is an antibiotic) and numerous infections and including fibromyalga, before being pretty stablized on plaquinil, mobic (prescribed anti inflammatory as naproxin caused stomach bleeding and was to strong for long term daily use), tramadol, and 5 mg prednisone. Diet and nutrition and 10 to 12 hrs nighly sleep was extremely important for me in managing the RA inflammation. Coffee and dairy and tomatos and tomato sauce were the worst things ever as they caused much inflammation, and a very acidic ph triggering flares.Second to this was sugar, excess gluten, soy, and other grains. Moderation extremely imp if not void in these things for me. Also extremely imp for me was proper absorption of nutrients which took much research for this, but so worth it, as my health and RA has improved significantly, and my Fibromyalga has been gone for 4+ years triggered by the methotrexate and biologics. The most important supplements were magnesium glycinate and calcium carbonate taken with a 1:1 ratio, and 2000 mg D3. They all need each other for each to be absorbed. Magnesium (mag glycinate not mag oxide)is responsible for over 300 enzyme reactions regarding muscle,bone,cognition,protein,sleep, hormones, etc. and is essentially ignored by traditional doctors..Do your research, this is a miraculous nutrient and is hugely deficient in those with RA. I also take fish oil tablets and a multi vitamin with high b complex (stress nutrients) which go a very long ways in managing my RA. I was very ill when i first came down with RA, in bed for 4 months, wheel chair for another 3 months, and a cane for another year and a half until i became proactive in my disease research, and got off the RA meds that were exasperating symptoms, lowering my immune system, inducing constant infections and flares, dental infections, and fibromyalga. I have been pretty much stablized using these strategies now for 4.5 yrs. I wish you the best in being very proactive and managing your RA in the best way you can.
    • michelle1901
      michelle1901 cheria

      Posted

      Hi cheria

      Wow sounds like you have had a very rough ride with your RA. I am so knew to this disease and didn't know much about it at all until diagnosed. When you say a flare up? How bad is it? Does it go away? My fingers have been swollen for 3 months continuously and other areas seem to swell up and then disappear. I haven't had a pain free day really since the end of January but do feel better as the day progresses and I am up and about.

      I have had no reaction to naproxen at all I take 2 a day and have done for many weeks. Tremadol helps with pain but makes me super sleepy and drowsy so I try not to take these as much, only when I am having a really bad day. It all sounds very stressful trying to work out which drugs will work and I have yet to start this process as I am newly diagnosed. Thanks for your reply.

    • cheria
      cheria michelle1901

      Posted

      Hi Michelle, yes, i trully did have a really rough ride with RA for about 2 years.My RA doctor said he had never seen inflammation rates so high. At the time I was in my 7th yr of education for Nursing and in a Physical Therapy program, without health insurance when i came down with the RA and was put on a waiting list for an RA specialist, untreated for over 4 months while the disease progressed. It seemed i was in an almost constant daily flare, not realizing the methotrexate and biologics, and malabsorption of vitamins and nutrients were at the root of my poorly managed RA. I am very sensitive to prednisone, which is miraculous at getting high inflammation rates and pain down, but it caused extreme side effects for me, mentally, and fatigued my adrenal glands to the point that many body systems were very off balance (reason for high magnesium deficiency). I could not take a high enough dose of prednisone to bring inflammation rates back down, and therefore was in almost a continuous flare, unable to move withiut constant, tearful pain. Now that i am on an RA medication that works for my kind of RA (over 150 kinds of RA or conditions that mimic RA but no way to discern most of them!) having no side effects except for possible vision ( checked once a year), and have discovered the magic of magnesium glycinate and other things i've shared with you in my other post, i only flare about once a year. I start feeling the pain and stiffness generally in the tendons and joints my hands, fingers, wrist, feet, and ankles, and often get a bakers cyst behind one knee.. and use a personalized reduced steroid pak dose for 5 or 10 days to reduce the inflammation..sometimes needing to extend the low dose longer before the RA is managed again. There is damage from the 2 1/2 yrs of poorly managed RA, so tramadol is used for this twice a day. Tramadol works as a stimulant and mood elevator for me as it has uplifting properties included for anxiety. Nurses have conveyed this medication can make a geratric population "flakey" but so far it hasn't effected me that way lol.
    • michelle1901
      michelle1901 cheria

      Posted

      Hi cheria

      Have you had to make any changes to your life with regards to ensuring you don't damage your joints any further? I find it hard getting in and out of a bath so I am having showers. I struggle to open jars and cans with pull rings. Lifting the kettle is hard and my baby boy is a heavy weight so my arm and wrists tend to become very sore.

      I always feel worse first thing in a morning and it's usually about 1pm when I feel a bit better and more flexible.

      Do you have days where you have no symptoms at all?

  • Rowbirdie
    Rowbirdie michelle1901

    Posted

    Hi Michelle 

    Sorry to hear about this.it really is so hard and scary at the beginning ,the pain s unbelievable and also the fatigue. I used a lot of painkillers.Do say yes to any help offered, shop online if you can, try to find other ways of doing things so there's not strain on the affected joints. ( I know that s easier said than done with a 1 year old) sad

    My diagnosis was a year ago March ( age 62)with much the same pattern as you ve described . I was then put on methotrexate which fortunately for me my body tolerated well.A year later it is much improved and under control, (however I am taking 3  disease modifying drugs ,a biologic drug and low dose prednisolone.these all lower your immune system in order to reduce the autoimmune reaction . These were added bit by bit and at each stage I wondered just what I was putting in my body!but it's worth it now that I feel so much better.) I have monthly blood tests to check no effect on liver etc

    It sounds like you didn't have wait ages for a  diagnosis, which is good, so do hope they find a treatment works for you soon. Everyone is different so it's a very personal journey .

    i kept a pain diary at the beginning , with food and painkiller notes. It helped me to see some days were better than others . ( or worse) it helped when I had to report back to the consultant  / rheumy nurse as they will ask you about pain level and if the pain has moved to new areas( disease progression) I also made sure my nearest and dearest understood about it. It s a big thing to come to terms with and we all need emotional as well as physical support.

     

    • michelle1901
      michelle1901 Rowbirdie

      Posted

      Hi

      I was diagnosed within 5 months of symptoms which is brilliant considering some people have to wait years. I had a full body examination with a rheumatologist who was brilliant but actually quite sad to break the news to me. I knew before I went to the appointment exactly what was wrong with me after much research on my symptoms. I have come to terms that this disease is here to stay. I can manage my pain quite well at the moment but my body soon warns me if I have overdone it and I end up bed ridden.

      It is hard to live with some days and I have shed many tears due to pain. My husband and family are great but they don't understand exactly how bad it is. These forums will help me to understand how other people cope. I know it can be mild to aggressive disease so everyone copes differently. Thanks for your reply

    • xLois
      xLois Rowbirdie

      Posted

      What RA drugs are you taking , Rowbirdie ? I am on MTX , prednisone & Orencia. Just started the Orencia 4 weeks ago and it is starting to help. My rheumy wants to get me off the prednisone as soon as possible. I had pneumonia and was taken off all RA drugs for 6 weeks so it flared pretty bad.

      I am finding some depression creeping in as can't do a lot of things because of my wrists and fingers.

      I've had RA for 26 years. I woke up with it one morning and within 1 month was a total invalid.....husband had to do everything for me. I had just quit work so we could travel but had to give it up for 1 1/2 years. Had a good rheumy that got me back to walking . It is a horrible disease but when I look around I see others worse off than me.

    • Rowbirdie
      Rowbirdie xLois

      Posted

      Hi Lois

      you ve had it really tough. I have only had RA for 14 months, but it's been roller coaster. I haven't had pneumonia or chest infection so have been able to stick with the meds. I am currently on methotrexate, sulphasalazine, hydroxychloroquine ( so I rattle!) plus 7 half mg prednisolone . I ve just had first Rituximab infusion , which i m hoping will work then I too will reduce prednisolone and sulphasalazine. I had 2 infusions of Tocilizumab near Christmas which really helped, but my rheumy thought it better to have a different biologic when he discovered some RA effect on my lungs. So I'm hopeful this biologic will work too. I can't wait to reduce pred. It makes me anxious and emotionally up and down. Unless that s the RA as well??! But I do find the less pain/ fatigue I have the more positive I feel. Are your hands very painful?

    • cheria
      cheria Rowbirdie

      Posted

      As you are on so many RA medications, i found that mtx was the cause of needing more and more RA treatment..sinse this discovery, and getting induced dental infections taken care of, i am down to just one RA flare every 12 to 16 months, and am on plaquinil and 5 mg prednisone daily. I have the same invalid type history as you for the first 2 years with the RA specialist drenching my system with multiple RA drugs until i discovered the apparant overdosing and toxin overload when getting dental trestment and needing to go off them for about 4 or so wks. The dentist gave me the augmentin antibiotic (a stronger antibiotic) for the dental infection that had been had spread into the roots and jaw which then gets into the bloodstream greatly effecting RA. It was during this time that approx 90% of my pain went away, going off the RA specifuc meds for this temp time. I never stopped the anti inflammatory nor the tradol and take these now, with plaquinil which has no side effects, except for needing a vision check once yearly.
    • Rowbirdie
      Rowbirdie cheria

      Posted

      Hi cheria

      I know that infection is more likely and  is a big problem as a result of taking immuno suppressants. Sorry to hear you had this problem but glad you have discovered what works well for you.  At the moment the meds work well for me and I haven't had any infections. But it s early days for me still so it's useful to know what works for others. I am expecting to have the DMARDS reduced as the biologic works .i m afraid I still had a Das score of over 5 even with methotrexate, sulphasalazine and plaquenil, plus pred. But no significant side effects except with the pred. So I am grateful to qualify for a biologic and to find it working for me at the moment. Take care. X

    • xLois
      xLois Rowbirdie

      Posted

      I tried Sulphasalazine but after about 3 weeks it gave me very severe abdominal pain so she took me off it. In my 5th week of Orencia & MTX plus 7 mg. prednisone. Have a lot less pain...biggest problem is in my wrists so have to pace my use of them.The pred. also does the same to me so hope to cut it very soon. Been on & off it over the duration of my RA . Thanks for your support. 
    • xLois
      xLois Rowbirdie

      Posted

      I tried Suphasalazine but after a few doses it gave me severe abdominal pains so had to stop it. In my 5th week of Orencia & MTX and they are helping. I also want to get off the prednisone as causing me depression & anxiouty. On 7 mg. Have been on and off it during my duration with RA. Plan to start cutting 1 mg. the end of this week.

      My wrists are still my problem so have to pace my use of them.

      Thank you for your support

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