Reactive Arthritis - positive ending

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Hi everyone,

I became ill nearly a year ago to the day and so I thought I would share my experience of Reactive Arthritis with you.  I don't share a lot on social media, and have never posted in a forum in my life, but to "celebrate" this odd anniversary here goes nothing...

Before last November I was a very physically active 34-year-old woman with a stressful career and busy social life. 

It took 6 weeks to get a conclusive diagnosis, during which time I was the most ill I had ever been in my life with what I now know to be classic Reactive Arthritis symptoms - pain in all my joints and tendons from the hips down making walking more than 10 steps very difficult, extreme fatigue, inflammatory temperatures, mind fogs, sensation of a UTI, bloodshot red raw but weeping eyes, extreme dry mouth, trouble breathing etc. etc.  

During those weeks, and once I received a diagnosis, I was terrified.  Terrified I'd never get better.  Terrified I'd never walk normally again. Terrified I'd never be able to go back to work.  Terrified I'd never be able to swim, or run, or dance again.  Terrified I'd never be able to have children.  The list went on.  

I spent quite a lot of time in bed on the internet looking for answers, my faith in my doctors having been severely shaken by my experiences in the weeks without diagnosis of constantly being sent away, at best being told to rest and come back if things failed to improve, or at worse being looked at almost as if my symptoms were psychosomatic. I wanted to know:  Why had this happened to me?  (Answer, doctors never did establish the infection that triggered my immune system's inappropriate response.)  What was my prognosis? And what could I do to make myself better, as nothing doctors were giving me (anti-inflammatories and steroids) were doing much good?     

I wanted to tell you all that, a year on, I am better.  

It been a long road.  You'll all know how Reactive Arthritis works so as you can imagine there's been lots of ups and downs.  I was discharged by the consultant after 6 months but I'd say it's only the past few months I've started to feel 100%.

Everyone is different and so what worked for me may not be the same for you but I thought I would share what I found helpful.  

I read online that some people had found acupuncture helpful.  I've never held too much truck with alternative therapies, and was scared of needles.  But I was so desperate to try anything to get back to "normal" I booked an appointment with a Traditional Chinese Medicine Acupuncturist.  When the first needle went into my foot I felt a pleasant rushing sensation down my leg. Where there had been pain and discomfort was suddenly energised and I was converted.  I went weekly for months and I believe, along with time, and other changes detailed below, it has helped me to recover.   

Once the flare ups started to get further apart, and I had a bit more energy between flares, I bit the financial bullet and joined a gym with a sauna and steam room.  I found the heat of the sauna especially helpful, both with the dreadful cold aches in my bones I had almost continually and with loosening the tendons in my legs.  

About 3 months in I went to see a hydrotherapist and got a set of exercises I could do in the gym pool myself, which I tried to do once a week for just 10 minutes.  

When I felt like I had more energy, about 4 months in, I cautiously started aqua aerobics classes once a week.  I told the instructor about my condition and she was brilliant and stopped me from overdoing it.  (The temptation to push myself too hard in an attempt to feel like I was normal again was something I have battled with during my recovery.)  Even though I struggled, had to take a lot of rests during the class, and hobbled out of the pool at the end, the sensation of having done something physical, however minor compared to what I used to do, was such a psychological boost.

As my energy levels increased, I started to go to aqua aerobics a couple of times a week.  And then I found a very gentle Iyengar yoga class, and started going to that too.  Although I had to block out the fact that I was clearly much, much less physically able than other people in the class that were more than twice my age, stretching the tendons in my legs seemed to help with my mobility a lot.  The yoga classes also helped me to quiet down the terror I felt.

I read a lot about diet, and, although I didn't follow the strict elimination diet recommended by some, I did find there were certain things that did increased my inflammation: mainly red meat, sugar (both natural and processed) and caffeine so I avoided them (although wasn't puritanical).  Now having given up caffeine, I'm not going back!

But over the past year I would say my recovery has only been in part thanks to these physical activities.  My state of mind has been equally important.  In the first months, whenever I thought about, and so became distressed about the future, an inflammatory fever spike would happen that I could chart with a thermometer.  This made me realise that my mind and my body were not two entities but part of the same system.  Sounds obvious but this is not how the medical profession was treating me.  And so, that's why I would recommend yoga and acupuncture (I have since started gardening which is gentle enough and relaxing too).  

I would like to say if you too are stressing about your future, there is hope.  Celebrate even the smallest advances you make - even if it's just getting out of bed to have a bath.  Coping with Reactive Arthritis is really hard and probably no one you know even knows what it is.   Please give yourself a break.  Don't beat yourself up.  Be kind to yourself.

You can do it!

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  • Posted

    I'm really thankful that you shared this. It's also very well written smile

    I'm on oral steroids now which I initially didn't want to take but the pain started spreading to my ribs which is quite scary. 10 hours after the first pill my symptoms went down tremendously, my foot swelling shrunk (of course not to the point where everything was normal again) and my lower back and ribs inflammation seemed to come to a calmer state as well. I am able to limp again which I'm super happy for.

    The scariest thing is that this will be a condition for life, but a good source says that 50% recovers in 3-5 months and almost all people in 6-12 months so I feel like I just have to wait this condition out and try to stay active and enjoy the things I can still do.

    I guess this forum also will have a bigger percentage of people having it in a chronic way since those are more likely to be active here in the longer term. So this might give a discouraging message reading on the forums here. I do my best to stay positive and thanks once again for your story. I'm happy it turned out good for you!

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  • Posted

    thank you so much for adding an encouraging story! I think all on here could use one. Can you tell me more about what you did over this past year as basic lifestyle practices? did you take vitamins or supplements? did you drink alcohol and if so which kinds and how often? I ask because these are the only two things I wonder if I could be doing better. I am at 11 months trying to recover and get back to my old lifestyle... I really dont want to get stuck living with this for years or a lifetime if I can help it.
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    • Posted

      Sorry to hear that you're still suffering 11 months on.  I did take a lot of vitamins and supplements - I think I was taking about 19 pills a day at one point including my meds!  I can't say if any of them had any affect at all on my recovery but happy to share.

      Before I was properly diagnosed I was on antibiotics for nearly 4 weeks (I was told I just had a chest infection) so, after some research, I took probiotics from a health food shop for a month as I'd read that a healthy gut can have an influence on Reactive Arthritis.

      Before I got ill I was already taking Omega 3-6-9, Evening Primrose Oil, Vitamin C, and Omega 7.  However, I discovered Omega 6 and vit C can be quite inflammatory so I stopped taking those.  I also avoided orange juice and oranges for this reason.  Make sure you read the labels of your vitamins/supplements - I hadn't realised there was also Omega 6 in the Omega 7 capsules I was taking.

      I started taking B12 just because I thought everyone always needs that and a multi-vitamin as I was so run down.

      I read about the beneficial effects of tumeric for other arthritic/inflammatory conditions so I started taking that, and drinking tumeric tea when I could.  I also read people with other kinds of arthritic conditions found rosehip beneficial.  I couldn't find capsules so bought some tea but I really didn't like the taste so didn't drink much of that...

      And, for energy, I started taking ginseng and drinking ginseng tea when I could. 

      I was no saint during my recovery.  During the first month I didn't drink alcohol because I just felt so dreadful but after that I did.  However, although alcohol may have strong pain-killing abilities it is a known inflammatory.  I found it did exacerbate my symptoms (I don't think any particular kind of alcohol was worse than another) but I don't think alcohol had an effect on my overall recovery time.  

      One of the worst things I found about Reactive Arthritis was that it seemed to be a waiting game and I struggled with feeling out of control of my own body.  I'm not sure anything I did helped to cure me but I do think they may have helped me to alleviate my symptoms.  But there were other things that seemed to bring about symptom flares that I could do nothing about, for example, hormonal changes during my menstrual cycle.

      I would say try anything you think might help you to feel better - even if that includes a drink of your favourite tipple every now and again!

      Good luck! 

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  • Posted

    Do you believe in the mental elements that Barbara Allen outlines as the starting pieces to healing arthritis? She says that anger and fear are stored in the body and until theyre properly released through meditation,  complete healing cannot occur. I am American, currently living in Australia, and theres something here called acuenergetics. I will start it next week but I believe its basically Barbara Allen's theory mixed with the concept of (not the practice of) acupuncture. So in the way that acupuncture takes the chi of your body and manipulates it to restore balance, so does acuenergetics, teaching you through meditation to re-balance the energy trapped in your body which is one reason we experience this arthritis.

    Im explaining this because I wonder what you and anyone else thinks. Was this a piece of your recovery process? I really dont know what to believe. I can imagine it being true for me - i do have some past negativity to probably work through, but doesnt everyone, sick or not? and i know the obvious answer is "ok, just try it, work to meditate on it and see if it helps. why does it matter to know first if everyone believes it?"  It makes me pause that Barbara Allen AND these acuenergetics practitioners are promoting their ideas as The True Way. They say this piece of mental cleansing is essential to get better, but maybe it only is for them. Maybe a lot of people can benefit from slowing down and meditating but energy being trapped inside isnt necessarily true for all. I dont know....i guess I just feel a little cautious of my emotional state right now - Im hesitant to start telling myself "you dont process your emotions and balance them well and thats partially why youre so sick." i dont want to kick myself when Im already down if these peoples theory is actually just coincidence and *happens* to work for a lot of people , isnt necessarily based in evidence or fact.

    Does that all make sense? In a nutshell, Im skeptical but open, and want to know what others who have recovered think.

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  • Posted

    Thank you for your thoughtful and positive story. I was also affected to reactive arthritis about 1 1/2 years ago, spent 10 days in the hospital with no diagnosis, and left in a wheelchair, my legs swollen double their size. Like you, my faith in doctors was severely shaken.  But, while everyone is different, I found many of the things you did very useful in my own recovery. Acupuncture was amazing in its ability to help me walk again after just several sessions. Physical therapy and massage were also extremely helpful. Because of the intense pain, I took pain meds for close to 2 months, but was able to gradually stop them and took turmeric and omega3 to lessen inflammation. I also took a range of supplements. Because I didn't have a diagnosis for a few months, I did not do steroids or any of the "normal" protocols.

    Because of the severe damage to my leg muscles, I found I needed a broad range of exercises to bring them back-yoga, weights, squats, lifts (I believe it has to do with short and long muscle fiber), but was finally able to be running again after about six months.

    You also talk about mental state and diet which I've also come to see as very important. Meditation is helpful. I also had my first flare up recently, which turned out to be only several weeks in duration without the swelling and intense pain of the first occurrence. At its start, I was rigorous in eating an anti inflammatory diet (mine was no lectin; developed by Dr Steven Gundry), and I think this perhaps helped prevent a more serious flare up. 

    It is a long road, but with patience and focus everyone should know there can be a positive ending. Every day I run my couple miles I'm filled with gratitude because for many months I didn't feel it would ever be possible again. 

     

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  • Posted

    Hi there

    Just want to give you an update on my situation.

    For me it basically was (so far):

    -3 weeks of strange foot pain

    -pain starting in my tailbone + severe foot pain where I couldn't sit normally anymore without pain. Putting the foot under cold water and lying down having it above my heart helped

    -5 weeks after first symptoms started, doctor told me to take corticosteroids. Finally something that helped after unsuccessful NSAID treatment

    -8 weeks in, pain in my back started (coming up from the tailbone pain I assume) it was just on one side

    -12 weeks in the back pain was tremendous. Want I went from 8mg to 6mg steroids I had an enormous flare up

    -16 weeks in, pain started to subside to acceptable levels, tapered steroids more

    -Now 5 months in, so about 20 weeks. I'm for 4 weeks on methotrexate after seeing rheumatologist. It's not working yet but should after another 4. Foot is still swollen and back/neck is stiff mainly in the morning. But right now it's nothing compared to what it was. I mainly hope that some day in the coming months it will all stop. Sorry for the bit of negativity here. But know that when you're suffering beyond believe, that it will slowly subside to acceptable levels.

    Stay strong!

    A

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    • Posted

      I am glad symptoms are finally subsiding for you. It is such an unpredictable disease that moves in odd ways, but eventually does subside. Hope you are back to normal quickly!
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  • Posted

    Reactive arthritis involves inflammation of joints due to an infection in another part of your body. The most common triggers are the genital, urinary, or gastrointestinal systems.

    If you have obvious signs of a bacterial infection in your urinary tract or gastrointestinal system, antibiotics can help it clear up. Which antibiotic you take will depend on what kind of bacterial infection you have. Your doctor may need to run tests to find out. Viral and fungal infections are harder to treat.

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