anyone else got this too ? i can't find any posts about it !...
Spondyoarthritis: anyone else got this too ? i can... - PMRGCAuk
Spondyoarthritis
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carineinparis
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I think about the only mention on the forums of spondyoarthritis I have come across was me telling about when my second rheumy wanted my PMR (textbook symptoms except bloods and response to pred) to be ankylosing spondylitis - proven not to be in short order - and at least 2 others saying they had had a similar experience. PMR is often an unwanted concept by rheumies we have found.
An arthritis forum might be more forthcoming? The PMR/GCA forums all seem to be rather more specific. Something at the back of my mind tells me there is one person but I really can't remember which forum.
how do people go back to work with these chronic inflammatory conditions ?
I have worked full time for the 3.3 years that I have had PMR. The first 14 months without treatment, which I found exceptionally difficult. You need a good supportive team, and a good Occupational Health. I work as a nurse doing 12.5hour shifts. OH make sure I only do a max of 2 days together, and have days off between to recover, which I need. I have the advantage of working in an acute ward where staff have a good knowledge of my condition and are very supportive. They have also made me exempt from nights which helps. Working also seems to slow the weight gain from Pred, as soon as I'm off on holiday the weight piles on. With an understanding employer, it is possible. Good luck x
Hi Runrig01, I am encouraged by your working story, I have recently spent 4 days in hospital with GCA recovering at home now. I have just reduced Pred from 60mgs to 40mgs that seems to be ok. I,m thinking of going back to work in 2 weeks time. I am nervous of how I am going to cope with it. My sleep is not very good at the moment but I understand that improves as the Pred is reduced. I really do want to get back to work, I feel that is what gives me my personal pride and independence. I will update as I progresss.
A lot will depend on what you do - if it relies a lot on multi-tasking and organisation and requires much concentration and decision making then do ask people for objective assessments of how you are performing. It may be a while until you are a low enough dose to sleep well.
Your welcome Tim. I am actually off sick at the moment, have been off for 2 weeks, , as I have had "GCA type symptoms" for 22 months. The 2 Rheumys I've seen have said I'm too young at 49, and bloods are fairly normal. I am due to see one of the country's top experts next week, so have my fingers crossed. Good luck, but rest plenty and only go back when you are ready x
Runrig01 I thought I was too young at 58, I thought I was a fit ex Rugby player but this has knocked me for six. I don't think I fully appreciate the seriousness of GCA, I was having a good day went to the shops with my wife came home mid day the went to do some gardening. That's when the pain started in my stomach, head and knee. I had to rest and it did clear quickly. The main point was just a little extra effort knocked me sideways. I don't know how to handle it physically and mentally.
runrig has spoken from experience - and how she does it I have no idea!
It very much depends what your job is. I have PMR and during the 5 years I wasn't on pred worked as a freelance translator - which meant my office was in the next room to my bed! I didn't have to be there at a specific time, I didn't have to shower/dress/breakfast in the early morning when I was at my worst and I could plan to stagger to the pool and do an aquaaerobics class after which I could move. Then I went home to work until late evening if necessary. I would get up from the chair to go to the loo and scream with the pain of the stiffness. But when you are freelance - you work or you don't earn. No sick pay either. It's more difficult if you have fixed hours - and even more so if it is shift work (though pred is a means of getting that adjusted as shifts and pred don't mix well) or a physical job. I couldn't stand for long and lifting was impossible.
Some are covered by disability legislation - GCA is, I don't know about PMR. That means your employer is obliged to make some accommodation - and they get brownie points for employing "disabled" people. As I say, in the case of pred as a medication it is not advisable to work shifts.
It is very much up to your employer and how helpful they are prepared to be. The union and Occupational Health should also be involved. And it depends on the form of inflammatory condition.
Hi carineinparis,
I have recently tested positive for the gene associated with Ankylosing spondylitis ( AS ) and am waiting to find out if it is responsible for my symptoms ( you can get a polymyalgic presentation of AS ). Interestingly jaw pain and headaches have been a big part of my illness as well, both slightly rarer AS symptoms ( I may still have a vasculitis component with a Behcets/ AS crossover )
With regards to working, the answer is with difficulty! I take my hat off to Runrig as well. I do a similar job and have had to reduce my hours and am currently going through re deployment. Not having a diagnosis, symptom control or definitive treatment hadn't helped either!
I accept I am very fortunate to have a very supportive team and certainly couldn't manage without them. My ward manager always spots the days I struggle, on those days she may allocate me admin duties in the office. I would be lying if I said some days are not a struggle, and some days I am reduced to tears with the pain. On my days off I have to rest, I have no choice. I do love my job and couldn't picture life without it. I have been off sick for 2.5 weeks now, because my temples are on fire as soon as I do anything, and tongue is burning and throbbing, as well as pains to back of head. I hope after seeing top specialists that they have symptoms under control so that I can return to work promptly. There are days when I wake for a shift stiff in the morning that I'm tempted to stay home and rest, but once im there im glad I made the effort. Working in healthcare is a bonus as your colleagues understand your illness. Take care x
Hello carineinparis - I don't know if you are still a member of the group or not, or even if you will see my response to your post of 3 yrs ago ! However, here goes... Yes from over here in Brittany - expat Brit. AS and the usual clutch of comorbidities - excepting for Uveitis (small mercy !)
Have had horrific head pains, searing left too right, then driving behiind the right eye and a feeling like the eye was going to explode in the socket. Then the pain disappears. Went on for several years, mebbe 3 yrs ? Then, suddenly, lost sight completely, blinded, but only momentarily. Foollowed soon after by loss of central visinion in the right eye.
Yes. Saw my GP. Saw two ophthos - one from the Sourdille ! No interest. Sourdille (am not using the consultant's name) said that there was nothing to be done, did not want to check out the MRAs I had done - at the Maussins-Nollet Clinic, Paris (best imaging clinic I have been to in France). The MRA did show problems of the PCA but otherwise was clear. Then Sourdille said a year later that he would operate...took a second opinion, no way, would not help. So reckon I was to be used as a sort of guinea pig. Dropped the clinic.
Then I suggested to my local ophtho (a young'ish fella, a Romanian not long living and working here in France) who has still to make his mark and to gather a reliable team around him) that mebbe it was GCA - he had not thought of that ! Did the biopsy, but the local CH hospital - we would call it more of a cottage hospital - surgeon who did the biopsy, only took 0.09cm instead of the required 3cm. Of course negative - waste of time. The head pains did diminish for a time, but are now back again, mostly in the evening. Plus pain down the side of the head and touch sensitive No, not migraines. Added to which a recent thrombosis, left leg, and pulmonary embolism, left lung; am on warfarin / Coumadine. So at the moment am in limbo. Looking for a decent rheumy and an ophtho who has the time of day with a good team ! Flying pigs and the moon is made of cheese <LOL>
As you are no doubt aware, ophthalmology in France is a difficult number, desperate scarcity of ophthos and even more of 'good' ophthos !
Coming back to your original question, 'Any spondies in the group' ? - Yes <smile> Apologies for length of post. Take care, go well -
'Can', but my heads were more to the 'Thunder Ball' type head. Like a red hot skewer slammed through from left to right of the frontal part, in a screaming attack. Then turning around to slam the frontal part of the right side of the head, down to the ear and then slamming in behind the eye. Then, disappear. Very rarely more than a few mins for each attack. Though several attacks almost daily day, for months on end.
Really more ischaemic.
The MRA with Gd contrast ruled out tumours, but did show up foetal PCAs. What is interesting, is that the recent Vascular Doppler showed 30% serrae of the carotid arteries and the biopsy, piddling as it was, showed arteriosclerosis. Now add in the PAD and thrombosis with occlusion of the left popliteal artery plus justunder 50% plaque build up, artersclerosis of the right leg, and looks like ... arteriosclerosis, with the 'thunder clap' slamming heads. Though more like lightning, than thunder claps !
Oh dear. No was the sudden loss of total sight, both eyes, then recovery, then later loss of central vision plus the tenderness etc etc that looked more like GCA. Need to find a vascular Doppler expert for the head - the excellent doctor who does the legs and body does not do the head.
One day will get this sorted, though in my 80s now, not too much point in getting over excited about it. Just that it is interesting, and I do like to 'know' <smile>.
Thank you for your interest and input PMRpro. Am enjoying this very well run group. Go well -
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