About Me

I am a 42 year old woman based in the north west of England and was diagnosed with Palindromic Rheumatism in 2004. I am self-employed (which makes it easier to have control over my own time) and do a lot of writing; as well as being an important part of my work, I also correspond daily to a cousin, and write therapeutically. I am also a great believer of lists. I do not have any children, (this is a choice unrelated to my condition) but I do have a cat.

18 responses to “About Me

  1. tracey martindale

    Hiim too from northwest england and only recently diagnosed with Palindromic rheumatism after 13 yrs of a misdiagnosis of Rhematoid arthritis, , i would love some advice about how you cope and how to deal with the constant flare up etc , your page has been so helpful but would love to communicate with someone with this condition as at present im only learning about what it is exactly, i too an 42 and from st helens merseyside … Tracey ,

    • I have been reading all the messages on this site and although I havn’t been diagnosed with PR i’m waiting to see a rhuematologist. Experienced chronic pain on and off for 2 years. hands/wrists elbows/arms shoulders. Pain lasts for 12 to 24 hours leaving joint stiff/sore then its as though nothing has happened? soon after one joint calms down get pain in another, although pain not as chronic? Possibly cause I still have diflofenic in me and I proceed to take more Seen 4 GP’s gone to A n E 3times. Gout, tendonitis, to oh youve pulled a muscle, prescription for 84 diflofenic from one GP visit. Flare ups getting more frequent. latest in right arms/shoulder then 4 days later left arm/shoulder? Before last flare up felt fatigue, headaches, as though i’d done a 5 hour workout in the gym, aches and pains etc. All bloodtests known to man been done last month all normal! GP thinks pain coming from neck? saw physio within 5 minutes of describing my symptoms over the past 2 years she said i need to see a rhuematologist? Think it comes to something to have to research your own symptoms. Feel as though i’m going mad. Does anyone out there identify with this? I’m desperate. Interesting comment from physio, has anyone in my family got inflammatory desease ” my 25yr old daughter has Crohns” she says theres a genetic link between that and arthritis? Thanks for reading this have never been on anything like this before. I’l sign off as desperate from Derbyshire!

  2. Hi Caroline. Poor you – this sounds really frustrating. I definitely identify with this – I really did think I was going mad when I started having these strange symptoms and I still sometimes wonder! Sometimes you just WANT something horrible to show in your bloods to prove that you’re not mad or making it up. It really is such a shame that we have to do so much research online to find out more because the doctors’ knowledge is so limited. There is some research just started on PR so hopefully it will raise the profile a little. I hope that you can get to see a good rheumatologist and get a diagnosis – but it does sound very much like PR symptoms to me. when the flare is gone, it’s as if it was never there, but when it’s present it feels like things are breaking and seriously damaged. this morning I have a flare in my elbows, wrists and fingers but who knows where it will be by the end of the day. I hope you get a sympathetic rheumatologist and can try some treatment (not that I’ve found a cure yet). Do also consider joining the PR group on facebook. It’s very supportive and people are helpful with questions.

  3. Everything I read about PR matches my symptoms exactly. The only issue is that my sed rate has always been normal. When I asked my doctor for a referral to see a rheumatalogist, she refused saying that I couldn’t have PR because it didn’t show up on the blood work. Have you heard of having a normal sed rate, but still having PR?

    BTW – thanks for having this blog. I’ve been dealing with these flares for over a year but was told that I just kept injuring myself or that I don’t sleep enough.

    • Hi Tina,
      That’s crap that your Dr won’t refer you to a rheumatologist. I wonder what you can do to get round that. I have NOTHING show up in my blood. Ever. That’s one of the things about PR – some of us have markers in the blood, and others don’t. I don’t. Your doctor is misinformed if they think that you need something in the blood before you can get a diagnosis. Arthritis Research UK is looking at some factsheets for doctors. In the meantime, you could maybe show your Dr a factsheet from Arthritis Care?
      Download from here: Arthritis Care website

  4. I did see a rheumatologist and she brought up PR before I could say anything about it. Of course, I wasn’t have a flare up that day, but she said I should see her the next time I have one (she would get me in same day). As luck would have it, I’m having one today – Friday afternoon, in my shoulder. My question is that I don’t notice swelling when I have a shoulder flare up. Have you ever been able to see swelling in your shoulders?
    BTW – I’m theteachingparent. I have a blog on wordpress too and I was logged in when I responded.

  5. hello again! desperate from Derbyshire here! left a message last april, saw a rheumatologist who was very sympathetic and came up with answers, yes I do have PR but also blood tests showed I also had Vit D deficiency, my levels were 8. rheumatologist shook his head in disbelief when he told me the results and said my bones would have started to break, and fibromyalgia. got massive doses of vit D to get my levels up normal now took 4 months and just have to take it twice a day now, (that was why my bones hurt), on meds for the fibromyalgia which helps, can’t thank the rheumatologist enough, they were brilliant. been a while since I had a PR flare up but maybe the mild winter may have something to do with it. does anyone else suffer more in the winter? My flareups seem to be when its really cold. Interesting fact I was asked if anyone in the family has an inflammatory illness, and my daughter has an aggressive crohns, , my blood tests showed I have rheumatoid factor. Hopefully the PR won’t turn into RA. I only notice swelling in my hands and elbows when PR flares had it in my shoulders too but hard to tell if they are swollen. Am not so desperate from Derbyshire now I have answers, its easier to deal with once you know.

  6. Just diagnosed today after 20 years to-ing and fro-ing to doctors about possible RA and one visit 8yrs ago to rheumatologist.

    Bouts were only one or two a year, but have increased in length, frequency and intensity in past two years. I could never get a blood test during a flare up as was often gone before I could even see GP.

    No treatment as yet as have added blood condition. So keep on keeping on. Must try find some new ways of coping… Automatic car for starters (need to replace the one I just stuffed into a truck)

    • Thanks for commenting Anne, and so sorry your symptoms have increased. I hope you can find some relief. every little thing to make life easier definitely helps. good luck with the new car!

      • Just noticed your reply. Back in September the consultant pointed me to. Fibromyalgia. I tick all of those boxes. Now not so sure about the PA, but probably do. Seeing a marvellous Physio who is untying my knotted body bit by bit. Includes weight work at home! I have also completed a MBSR course and hope to do a breath works one in 2015. Currently reading through some books and using the lovely Vidyamala meditations. Must get a bell to remind me. And of course the dreaded meds from the GP which make me too drowsy to stay awake in meditations longer than 15 mins! Grrr.

  7. I had been diagnosed about 4 years ago (60) with Psoriatic Arthritis but no one could really tell me why they diagnosed that when I didn’t have psoriasis. My family doctor suggested that it may really be palindromic rheumatism which I nor anyone else had ever heard of. I now waiting for an appointment with a specialist in another town. There is a distinct shortage of Rheumatologists in our area.
    I hate it that any of us have this crazy disease but so grateful to have found others that share this experience.
    The factor that I have suspected of precipitating a flare-up is stress. I live in the U.S. Midwest with cold and snowy winters. I went south for the winter this year and didn’t have a flare-up for the 2 months I was in warm sunny weather, but I also didn’t have any stress. Back home, I am under deadlines to finish work and have had 4 flare-ups in the last week. It makes it nearly impossible to live a normal life. When my condition gets in this kind of cycle I usually start a round of prednisone which will stop it so I can try to get back in control.

  8. I have just recently been diagnosed with PR and I feel I have been quite lucky in the fact it only took a year to diagnose. It is a releif to know I’m not going mad as people cannot see it understand this illness. The symptoms are just right and I have just had an injection of depo-medrone (steroids) then in three months I see my specialist. If there is no response to the depo-medrone she suggests naproxen on a regular basis and introducing hydroxychloroquine. I feel constantly tired and my job is physically demanding with lots of manual lifting. I’m struggling to be honest. I work five days a week and barely have the energy to wash and feed myself on an evening. I sleep on the sofa every evening then drag myself to bed to start it all over again. My partner finds my lack of energy hard to understand. I feel lost…… I have been looking fir a new job that is less demanding but worry as bout the amount of time I may need to take off when I have a flare up. Do I tell possible new employers about my condition? Part time work would be better for me but I worry about the financial implications. I am forty years old. And a step mum. I cannot have children of my own to due other medical conditions. I struggling with my moods lately too. This could be due to the fact I quit smoking three months ago. Can someone offer me some advice please?

    • Hi Paula,
      Sorry to hear you’re struggling. It’s really tough dealing with a full time job and this illness too – let alone the pressures of family too. It’s bound to impact on your mood and how you feel emotionally, when you’re dealing with so much, and worried about the future too. I’m not sure what to advise about telling new employers about your condition – I did, because in the UK, by law, you should not be discriminated against if you have a disability – which this is, but also because I knew that the job I’m doing would be understanding. But not all employers will be. Have you pointed your partner to the Spoon Theory? It’s mentioned on this site and there are links to the original website. It’s really useful when trying to get friends and family to understand the energy issue.
      I do really recommend you join the facebook group. There’s a great bunch of people on there, all happy to share their experiences and give advice. I’m sure you’ll find it useful. It’s just called the Palindromic Rheumatism group.
      Good luck and take care.

  9. Hi Ruth,

    Thanks for your reply. In answer to your question yes I explained the spoons theory to my partner, he sort of understands how I feel. I have to say I love the spoons theory of explaining things. At the moment my spoons are all used on work, evenings I crash and weekends in bed and that’s without a flare up. I am currently on sick again due to a flare up. Started in my neck and shoulders. You explain things so well Ruth, I can relate to the foggy brain and waking up and the effort it takes to even sit up and get out of bed never mind stepping one foot in front of the other. Simple every day things can be such a drain. I also agree that my symptoms are different to those in the arthritis uk booklet. I would say I too have energy problems and feel constantly drained and tired. Also the term palindromic contradicts my symptoms because I would say they don’t completely go away. I’m afraid I’m not on Facebook only instagram. I have decided to tell possible employers about my problems and just hope they understand. My current employers do not really understand at all. You get the comments and questioning but they don’t understand. I have already had the talk about the amount of time I have had on sick. I am thinking of taking advice from the citizens advice about work as I really think I need some help with this area of my life. At the moment that seems to be the thing that’s stressing me out and causing me problems so I’ve made the decision to try and resolve it. I would like to thank you for your advice and help.
    Paula

  10. Hi Ruth…..After years ago of suffering and being misdiagnosed with all kinds of things, mostly gout, I was lucky to see Dr. David Trentham in Boston who treated me with minocycline. I was on for 3-4 years. I am thankful that after years I can get twinges but no real flare ups. Dr. Trentham has since retired.

  11. Hi Ruth,

    My name is Anuj Agarwal. I’m Founder of Feedspot.

    I would like to personally congratulate you as your blog My Palindromic Life has been selected by our panelist as one of the Top 40 Arthritis Blogs on the web.

    http://blog.feedspot.com/arthritis_blogs/

    I personally give you a high-five and want to thank you for your contribution to this world. This is the most comprehensive list of Top 40 Arthritis Blogs on the internet and I’m honored to have you as part of this!

    Also, you have the honor of displaying the badge on your blog.

    Best,
    Anuj

  12. Hello, Ruth! 🙂
    How are you today?

    I’ve just recently found your blog. And, actually, your the very first other PR patient i’ve ‘met’ (sort of). I haven’t had the chance to back read your posts, but, as early as i now, i’d just like to thank you for this gift of sharing with us this part of your life. Another very big, fat, with-warm-hugs thank you because through you, i found the The Palindromic Rheumatism Group on Facebook. I’m a member now, and it gives me a certain sense of comfort that i’m not alone in this struggle. Although my husband, my family, relatives and friends who know that i have PR have been supportive of my condition, it’s a different feeling to be able to share experiences and insights with one who really actually knows how it feels.

    I hope to learn from and interact with you as we all go in our life’s journey with PR. 🙂

    May God bless you more! *big hugs*

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