I have APS and have been on Warfarin now for 9 years. I managed to become a really good ultra-distance runner in 2010, though have been struggling with injury ever since.
I am wondering if other fit APS sufferers seem seem to 'repair slower'? And have more rheumatoid issues than the general athlete population?
I would be very interested to hear about the experience of other people with APS/Hughes Syndrome who manage to compete in endurance and ultra endurance sports.
I have always considered my body to have what I termed for years (s**t constitution). Susceptible to muscle lumpiness, piriformis inflammation/tightness and bone issues. My heal time seem to be much slower than the 'generally accepted recovery duration' for that particular injury. A slight niggle can take many months to resolve or get worse. Any deep tissue physio/massage and stretching seems worsen and stiffen the suspect area more. I seem to be in a constant state of injury to some extent. Even with time off, I tend to just get stiffer and this rarely resolves the issue.
I'm totally frustrated and need some advice.
SHAZ
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Sharon1976
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I'm not sure that I am the best person to attempt to answer this but I would consider myself fit and active - I used to race horses at endurance events for a living - I ride dressage for fun now! I had a couple of nasty falls / accidents in that time. I have always found that I heal quickly from the big things like broken bones but when it comes to muscular damage or internal bleeds into soft tissue, or even damage to the skin.
I haven't found massage to be detrimental but my physio has used Ultrasound and facial release techniques to some success.
I'm a former racing cyclist, now a leisure cyclist, with APS diagnosed in 2002.
Initially, following anticoagulation reducing symptom, I found that I was able to ride all day up to 100+ miles.
However, what has caused me issues, in the last few years, is bad myalgia, which seems to have come on after taking various blood pressure medications. I have stopped taking these but the myalgia has not resolved and cycling, especially uphill, is no longer a pleasure. I get burning muscles, lack of muscle power, stiffness and cramps.
My journey is documented to some extent here: sharonscholz.com/ before the 'wheels fell off' and injury plagued my life.
In very brief:
From never being fit aged 30 I started to exercise for the first time in 2007. In 2008 I qualified to represent my country and running became 'life'. I fought and repaired from 2 stress fractures and developed my running insanely.
I have now represented Aus 5 times in World Championships for 24hr running. (2009 - 2013). Only once (in 2010 - did I hit the line ready - fit/lean and pumped) resulting in a 225km PB. Running however became life, and since 2011 injury / health concerns a major barrier to maintaining and now becoming competitive. Being able to attain the distances required to continue to represent my country.... feels so far away. I am just so sick of hurting... My husband and I now are the directors of 2 running events... we have done amazingly well building these. Wow - life history in 2 paragraphs
Getting back to questions...
Do you experience muscle soreness, aches and muscle weakness after exercise? I.e. throughout the day and night. Being now overweight and trying to train effectively 'strengthen and increase endurance fitness' with muscles that are usually 'mush' - just is not working.... and is depressing in itself.
I feel like I'm letting our family down and I'm drowning in whole of depression.
Yes I do experience muscle soreness, aches and weakness both after and during exercise now. This is only since I took some bp medication and, after the stopping the first lot ACE inhibitors I returned to normal but after taking just one ARB I had terrible muscle problems and these have never completely resolved. I now take Co-Enzyme Q10 and I think that is helping a bit.
Thanks for sharing your experience. I have read your thread looking at the treatments and funny turns. I really hope you are feeling better now.
Are you still taking Fragmin?
I have only ever taken Heparin (in hospital so they can operate), Clexane during pregnancy and then transferred to warfarin, so reading further is opening my eye to other possibilities.
I am in the West of the UK, near the cities of Bath & Bristol, so I do not know of any APS doctors in Aus.
Yes, I am on Fragmin instead of Warfarin and have been on it for over two years now and feel better on it than I did on Warfarin and I have not had any of the clotting incidents that i had on Warfarin.
I've been on Q10 for about two months and I thought it was helping but I'm not completely certain yet.
Just in case it helps, I'm on Clexane too - warfarin caused me major problem when i fell off or got injured. Clexane (although a jab) is a bit of a wonder drug!
We have many Australians on here, some will give you their local knowledge, if not on this thread, post a question about Australia! Also names on here you can contact: apsaction.org/
I'm so exhausted. Being depressed saps so much energy. Headaches and fretting are not helping my decision making. I need to start thinking straight. YAY - happy B'day to me....
I Think you shall look back of what Salty and MaryF have advised your some days ago. They know this illness very well and are also very wise people.
You have a therapeutic range between 2.0 - 4.0. in INR and you say that they do not like you to be over 3.0. Not good!
I would (if I were you) see to that I get an APS-doctor and also try to keep my INR steady (!) over 3.0. Then you can rule out that your dizziness and other neurological things depend on a too low INR. Also try to find a selftesting machine. Do the tests again! D, B, iron etc.
I have also Lupus Anticoagulant (not Lupus) and all the other antibodies in high titres and my APS-specialist has told me it is possible to have parts of Lupus.
I wish you luck with your "running" (sounds fantastic )and I hope you will soon feel better.
Wish someone on this site from Australia could give you the name of an APS-specialist. Try also apsaction.org
Thanks Lure2 - sorry for the long post... I am likely to start anti-depressant medication soon to start helping me deal with the collaboration of life pressures. So that is being attended to.
I am seeing a specialist next week - Prof Andrew Grigg is the Director of Clinical Haematology at the Austin Hospital and formerly the Deputy Director of the Bone Marrow Transplant Unit and Clinical Haematology at the Royal Melbourne Hospital.
Dr Grigg qualified from Melbourne University in 1980 and after training at The Austin Hospital and Peter MacCallum Cancer Institute, spent two years as a BMT fellow at Vancouver General Hospital. From 1991-2000, he worked at RMH and in 2010 moved to the Austin to take up his current appointment.
His main interests are in clinical research across a broad spectrum of haematological disorders, both benign and malignant. In the area of stem cell transplantation his publications and interests have covered areas including (i) pre transplant variables predicting outcome after transplants for acute leukaemia (ii) intensification of chemotherapy regimens prior to transplant and, conversely the role of reduced intensity conditioning prior to transplants (iii) defining indications for transplants and (iv) long-term transplant-related complications such as infertility, iron overload and osteoporosis and fungal infections. He has a long-standing interest in fungal infections in patients with acute leukaemia and those undergoing allografting, focusing on (a) targeted prophylaxis in groups identified as high risk (b) the replacement of empiric anti-fungal therapy in patients with persistent PUO with more rational approaches and (c) approaches to breakthrough IFIs in patients on prophylaxis.
I am not sure of the questions I should ask - expect for white blood cell count, INR targeting and repeat testing for APS indicators. Though should I requesting 'other' tests? There are just so many,that I just don't have a clue where to start?
Having some literature supporting a higher INR than my current defined target may well help. I have been madly researching and have requested all my INR results for inclusion in my tests report. Also looking at other possible therapy options will be interesting.
I have collated my entire test history showing all my blood and urine test results from today 2014 back to 1999, when I first started presenting with issues. I just don't know who can effectively assess these and whether other issues have been discounted because of a positive APS diagnosis.
An added complication is that much of the blood testing done, has been close to completing a 24hr running events, and as such show anomalies associated with muscle breakdown/protein, high CK levels eg. due to excessive physical activity. So yes, now not training for over a month may be the ideal time to retest in as many areas as possible.
Any chance you know of a good APS doctor in Australia? My original APS / Heamatology doctor retired. She was brilliant with keeping me informed of the progression of the research results being done was a integral part of us being able to have our child Jasmine (now 11 years).
If there is no good APS Doc in AUS, is it possible to forward results and set up perhaps appointment for next time we travel.
This is where I am not sure how much time or input you would like to give and below is a somewhat extensive outline of the testing that I have undergone. You and other forum members are most welcome to spend time and offer advice, though please do not feel obligated to do so...
Cheers SHAZ
As far as testing is concerned there is a broad range of tests that I have undergone over the past 15 years
Iron testing has always bounced around dependent on my exercise level and now having been on iron tablets for the past 3 years, seems to have stabilized:
I intend to ask about increasing my INR target levels (currently 2 - 4) to above 3, possible use of Q-10 and consider Fragmin as an option. Migraines, forgetfulness and anxiety/depression.
Maybe also explore muscle repair / mitochondrial complications with APS or rheumatoid concerns.
But I am totally confused when it comes to requesting further exploratory testing, so any advice in this area would be highly valued.
Do you have any more advice to questions I should ask?
On the exercise note:
I know I have piriformis syndrome, so stretching and strengthening is the prescription for recovery. Even doing this without exercising does not seem to be alleviating the issue.
Every time I do go for a run, my pirformis tightens and then the stretching seems to irritate the area further. It is so frustrating running short distances and coming back sore, when I have successfully run 225km in 24hrs and have been running 100km + per week for several years. Now 3 - 5kms makes me sore and that sucks... big time. Grumpy.
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