Acupuncture… Wish I’d had my tutor as a clinician!

In a previous blog I planned to do a blog about acupuncture and/or hydrotherapy, adding in some research, and I did start looking into the papers… but for some reason my heart just wasn’t in it! And if you have ever tried to read a research paper when your hearts not in it you will know that they are the perfect antidote to insomnia!!

 

So instead I will just give you a run down of my personal experience! I’ll try and give you a brief history of acupuncture first from my notes taken whilst training in acupuncture earlier this year, unfortunately I haven’t really had the opportunity to practice my acupuncture since the course… and you certainly can’t acupuncture yourself effectively!

 

There are two recognised types of acupuncture TCM (Traditional Chinese Medicine), and the western approach.

TCM is known to stretch back as far as 3000 years, it is a holistic concept of treatment and a recognition that the body has the ability to return to a balanced state of health/repair itself given the correct stimulus. TCM aims to balance ying and yang (two opposing energies), takes into account the 5 elements (Fire, Earth, Metal, Water and Wood), and along with assessing the pulse, and tongue (and a few other bits and bobs) TCM practitioners try to gain access to the energy that circulates in the body to restore balance and subsequently healing.

 

However, the NHS can’t really work to those guidelines!!! Western medicine needs evidence based practice, it needs proof that what it delivers is backed by clinical evidence and is cost effective. Practitioners have had a good idea that acupuncture works in certain situations, and therefore it has been dabbled in in western medical literature since the 17th Century, but only really has there been any western systemised clinical trials since 1950… so we are a touch behind the Chinese with this one! Sadly western medicine tends to ignore the wealth of evidence from China, to do it’s own. Evidence has been looking into the science behind how acupuncture works, the science behind pain, and how we can modulate pain, and has yet to look into how acupuncture can be used for asthma, gastric motility, mood, addiction, etc. etc. etc. in any great length.

 

What we do know is that acupuncture can have a strong analgesic effect… I’m not going into the science of pain and how acupuncture effects pain… that is was too much for my baby brain to take at the moment ***

 

Ok… back to my recent experience… As I said there are two approaches, I was trained by a western practicing physiotherapist who happened to be Chinese, and after learning the western way, has been to China to learn the TCM method also… He looks at papers from both sides of the globe for his evidence and teaching, and therefore stepped away from the rigid teachings of some western acupuncture societies to pass on his wealth of knowledge to hopefully produce good practitioners that get results, whilst still are able to backup their practice with evidence.

One of the main aspects of his teaching was that acupuncture needs at least 6 sessions (3 weeks getting treatment twice a week), plus there needs to be progression, so start with 6-10 needles (consider if this is unilateral or bilateral – so may need for example 6 needles per hand if treating hand pain) but increase number of or change points of needles as required, aim for 30 minutes treatment time, and make sure you stimulate the needles initially every 5 minutes until Deqi (energy – generally felt like a numbing heavy sensation – this is the sensation that enables people to undergo surgery with only acupuncture as analgesia!!) is achieved.

This is how both the western and TCM have shown that acupuncture gets results….

 

My acupuncture consisted of (despite my pain being widespread) once a week sessions of 30 minutes for 4 weeks, two needles in each wrist (this didn’t vary or change at all despite little help from the first couple of sessions), stimulated once per session, with no Deqi achieved, and a huge amount of discomfort 1) in the positioning of myself – have you ever tried to sit in one position for 30 minutes without moving an inch because you have needles sticking into your very sensitive skin, and 2) in the needle sites them selves as they were in so shallowly that they waved around in the breeze from an open window.

Acupuncture, although not a painless procedure – someone is sticking needles into you – is on the whole a very comfortable treatment. Most of your bodies pain receptors are in your skin, once the needle has passes through these into the tissues below there is very little to be felt. Acupuncture needles are sooooo much thinner than when you get an injection, and therefore are far less painful than any injection…. unless they are left in the superficial layers of the skin!!!

 

So all in all… I’m afraid despite how lovely my clinician was, my acupuncture was a huge failure, however this lady wasn’t used to treating ladies with RA, she’s used to treating pregnant ladies with low back pain and pelvic pain, and all the girls at hydro that I spoke to that were getting acupuncture for their pain were getting great relief, therefore I feel it was probably a lack of experience of treating other areas of the body!!!

I think probably my background knowledge also put me at a disadvantage as I was sitting there thinking… ‘this isn’t enough needles, there are better points around the hand and arm that could be used, the needles aren’t in enough, they haven’t been stimulated enough, I’m not getting that nice warm heavy numbing sensation’.

As they say, ‘if you believe something is going to work it probably will…. if you don’t believe in it it probably wont!’. I do believe in the benefit of acupuncture, wholeheartedly, just not my recent exposure to it!!

 

So, my advice to anyone who is considering acupuncture for RA… I’m sure it has it’s uses, but if your looking for a practitioner do your research!! Either TCM or Western I believe both have value, I think it is more important the level of experience that that practitioner has in treating YOUR condition or problem! Ask them how many people have they treated with these problems, what is their success rate, ideally get some recommendations from people who have been to them before, and check out their registration to professional bodies – anyone can do a couple of weeks course and pop a certificate up on their wall, but if they are registered with a professional body then they will be regulated!!

 

*** Pain is a really fascinating thing, and how the body and brain connect to signal pain or block pain is very interesting, so if you ever decide to look into it, there are thousands of books and websites and papers that go into it in varying amounts of detail!! Just be prepared to get your thinking cap on and give yourself plenty of time!

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Embracing Research

One of my aims when starting out on this blog was to provide information regarding research into Rheumatoid Arthritis, and other related topics, and to encourage more participation in research. Plus help broaden my own and others knowledge on the subject of Rheumatoid Arthritis.

My rheumatologist is based in Leeds, at Chapel Allerton Hospital. They do a huge amount of research, and my initial experience of Enbral (Etanercept) was through a research study they were conducting at the time (EMPIRE study). The research arm of the hospital is the Leeds Musculoskeletal Biomedical Research Unit (LMBRU), and they have Patient and Public Involvement (PPI) groups meetings every two months or so. Go and have a look at their page, and check out their Useful Links for Patients.

Their next ‘Ask The Researcher’ PPI meeting will be held on Tuesday 12th November at 1 pm on Polymyalgia Rheumatica and Giant Cell Arteritis  presented by Dr Sarah Mackie and ‘ An Update on Scleroderma’ presented by Dr Francesco Del Galdo.

I personally don’t live particularly near Leeds (about a 2 hour drive!), and whilst I’ve been at work I have been unable to attend any of the meetings, but this is something I hope to change now I have a little more time on my hands… unfortunately it’ll be unlikely that I’ll be able to attend the above meeting as my due date is the 8th November!! I know many of you will also not be physically able to get to Leeds, UK, for these types of meetings however, my aim is to bring attention to this sort of thing happening, and that it may be going on at your hospitals too, so keep an eye out!!

And in the meantime, I will do my best to bring you any useful snippets from any meetings/groups etc. I get to attend!!

A Tough and Emotional Week…

It’s the Friday afternoon, of a very tiring and emotional week. My last post stated ‘but it will get better’… The toughness and emotion have been present all week, neither better nor worse, the outcome of the week, I think all though a hard one for me to accept initially, is probably the right outcome… So I think things will get better!

Last week I self-certified a few days off sick because my joints just wouldn’t let me keep going. Back to work on Monday… a difficult decision in some ways as my very supportive boss said as I left mid-morning on Wednesday, ‘take all the time you need and make sure your right before you come back, don’t rush back’. I appreciate the sentiment, but when every morning you wake up and feel rubbish, work or no work, how do you tell which morning is the right morning to go back? However, Monday came around, and I felt I should try a new week.

Tuesday morning I had a Women’s Health physiotherapy appointment that I had arranged whilst off, she was supportive, but as I know too, there is little she can really do. She can’t cure my RA, but she did offer hydrotherapy and acupuncture, which I have accepted. I’m happy to try anything that might help ease the pain or stiffness. I have been doing my own hydro of a fashion when going swimming, but it’s also nice to get other therapists ideas on exercises/rehab.

Wednesday was a day off (using my annual leave to break up the weeks), which worked well as I was exhausted after Monday and Tuesday, and hydro is on a Wednesday at 13.30 which would have been really awkward if I had been at work.
Hydro was lovely, very gentle, and a lot less than I would do on my visits to the pool (but at the cost of £3.80 per swim I’m afraid I feel I have to get my money’s worth!!), but it was great in the warm water to take my joints through their full range of motion with very little pain. Plus as there were ladies there with pelvic girdle pain there were core exercises as well which you can never do too many of!! Now granted… getting out the pool did suddenly make my body feel twice as heavy, but it had worked wonders on the lovely water retention that has come to fruition over the last week (Just to add a little extra size to my already fat feet…!! To think I once wanted to be a foot model!).
The physio is going to add acupuncture to my treatment plan for next week as she didn’t want to overdo it in the first session. So that will be interesting, having never had acupuncture as a treatment!!

Thursday, back at work, feeling some benefit from having the Wednesday off, but still, as every morning is proving to be, a difficult and tired start to the day.
For the last week I have been sleeping in the spare bed, it has a memory foam mattress, and space! Which in this beautiful English summer weather, is worth its weight in gold!! Because by ‘eck this little baby is making me warm!! Plus the fact that I am trying my best to sleep on my side, which is very uncomfortable for my shoulders and hips no matter how many hot sweaty pillows I use in all manner of places to prop myself up! So every night without fail, I will wake up several times to sit up and turn onto the other side (rolling is impossible at the moment). This swap of beds has made for better night’s sleep for both of us… but it is weird. We don’t quite feel in the right age range to be having separate bedrooms just yet… so hopefully this won’t be a permanent thing!!
Anyway, back to work… I had a very minimal case load in comparison to my heavily burdened colleagues, which is due to their lovely support, but it does make me feel pretty useless and quite guilty. Although I do understand that if I wasn’t there at all those patients would be added to an ever growing list of patients for my long suffering colleagues to deal with. So I’m not totally useless… By the by, I got through the day. Exhausted, wiped out, fog brained, done in. The drive home was weary, and I was finding it difficult to keep my eyes open.
At home, I vegetated on the settee, despite the most beautiful summer evening (we bought out first set of garden furniture this spring – I was so excited – but I have barely used it as every evening all I want to do is go to bed!! Last year we had had barbeques coming out of our ears, using dog crates and camping chairs as furniture!!). I had a weep and a chat with Andrew about how I was feeling, and at 8.30pm we went outside to watch the dogs in the garden… that cheered me up.

This morning arrived, and I knew I had my 25 week midwife appointment. So after I had eaten my breakfast I wrote down the main things that were making my life hard (picture below). I felt I had to do this, as I knew I’d either forget (fog brain/baby brain… it’s a wonder I know how to spell!), or I’d be too upset to get the words out. For me at the moment, the worst feeling is that I don’t have the mental strength to keep going in to work and focusing. The physical side is hard, but as anyone who has RA or any other chronic pain problem will say, the pain is a given so you just keep going, working through it. But once the mental toughness has slipped, the pain becomes too much to manage.
The mid wife was lovely (I’ve not seen the same one twice yet and some have been better than others!), and very supportive, (yes I did get teary and upset). Everything baby wise is going swimmingly. But she immediately made me an appointment with the GP so I could discuss taking some time off. The GP (a very well dressed, highly made up, hard faced, slim woman) was less supportive and comforting. Very matter of fact and (I felt) suspicious. But after some rather hard questioning she signed me off for 2 weeks, and prescribed me some ibuprofen gel (10%).
I felt emotionally drained. So after letting work know, and again getting a lovely response from my boss who has been nothing but supportive the whole time I’ve been pregnant, I went home and slept!
So let’s see how the next fortnight goes… I worry I’ll have the same dilemma as I did this Monday. Every morning is tough, how will I know if I have enough strength in me mentally as well as physically to go back to work, and how will work feel if I keep popping back for one or two weeks here and there?
I’m not 100% sure about using the gel… especially not if I’m off work. I prefer to manage my pain in other ways if I can. Any thoughts on using Ibuprofen gel during pregnancy?

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A tough start to the week… But it will get better!

Last Wednesday I went home ‘sick’, I stayed off until Monday, I decided for the first time in my life I wouldn’t rush back the next day. I felt much better than last Wednesday, but it’s very difficult to know how ‘well’ you are when every morning is so difficult, and every day so dependent on the activities that it holds.

Work was ok, a good distraction, but generally when I’m distracted, I forget quite how much I’ve done. It was a busy day Monday, and an even busier Tuesday. And it’s only when I sit down at 3/4pm to do my notes for the day that I realise I can’t get back up again, and by 4.30pm my hand is fixed in the pen holding position! Doh… Maybe I’ve done too much again. But I feel so guilty that I already have a light case load, because as a team we are so stretched at the moment with staff shortages, I already feel like I’m not pulling my weight.

Tomorrow is a day off, I have started to use my holidays to take days off in the week to break the work up…. Hopefully this will work… But right now, as I struggle to type, struggle to move on the settee, struggle up the stairs, struggle to hold my tooth brush and struggle to get comfy in bed, I don’t know if one day is enough. Let’s hope so!

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Zeus and Riva this evening with their birthday tea… 3 years old today! Sadly I haven’t made it out on their birthday walk.

Good Days and Bad Days…

We all recognise this pattern I’m sure. I have been working at my pacing, and I have eliminated milk from my diet (not quite dairy completely… but not far off), and I am a lot better than I was 4 months ago:

Fat Fingers!

Fat Fingers!

I’m sure the above changes will have made some difference, however, as every medical professional keeps telling me, ‘as it [pregnancy] is a high steroid state for the body, RA tends to get better naturally during pregnancy’, maybe it’s just that as the months pass by, my natural steroid levels are helping me keep my pain at bay.

My last consultation with a medical professional was with my obstetrician. She informed me that despite there being no real risk to baby with taking the prednisolone, if I continue with it for the duration of the pregnancy she will have to have me on IV hydrocortisone during labour and keep me in for observation for 3 days post-partum. This means a consultant led labour in the hospital. I had kinda had my heart set on a labour that was midwife led, and ideally involved a water-birth. So I have decided to give it a go giving up the steroids.

The last time I came off the steroids was at about 8 weeks pregnant (March-April time), I went from being on 10mg daily to nothing, I lasted 5 weeks and I was in hell…. See hand photos above.

Since going back on the steroids, I have reduced them down gradually from 10mg to 7.5mg to 5mg to 2.5mg, but before the obstetrician appointment, I found I was still struggling at 5mg, and therefore didn’t spend many days at 2.5mg. I was in turmoil, I felt that if I was still getting pain and stiffness at 5mg, what was the point of taking them anyway, but the pain stopped me from stopping them all together as I knew I just wouldn’t be able to carry on at work. So I stuck at 5mg, knowing that I had pain, but that it was less than I would if I wasn’t using them at all**.

After seeing the obstetrician, I made the decision to try to wean myself off the steroids, and have accepted (reluctantly) that this may mean I have time off work if needed. I wanted to come off the steroids if I could anyway, as I wasn’t 100% sure they weren’t giving me muscle and tendon pain (or was it just my tendons with synovial linings that were giving me the jip and therefore all part and parcel of the RA… the trials and tribulations of being your own therapist!), which to be honest I could do without, especially with a little baby on the way. Plus I’ve got to stop them eventually, therefore, I feel better now, with it maybe effecting my work, than when I have junior to look after, love and enjoy!

Essentially, this is me starting to consider my life and health over my sickness from work…. A big step for someone who abhors being off work.

So, my regime has started, my week on holiday was my last week of 5mg/day. I then started to alternate 5mg/2.5mg for about 4 days (I have a short time frame if I’m to get off these drugs in time for my obstetrician to be happy!! 28 weeks… I’m currently 24 weeks!), I’m now at 5mg/0mg… the first few days of 0mg weren’t too bad, and some days even the 5mg days were worse (possibly activity related), today has been a 0mg day… I was hoping to go swimming, but I have postponed that until tomorrow – today was tough. I have a big fat swollen knee, and a very painful left ankle and midfoot… but it has been a busy days at work too. Hopefully tomorrow will be better!

The plan is, to break my 5mg days down to 2×2.5mg initially, then go to 2.5mg/0mg, and a few days before week 28 to finally get to 0mg/0mg……

That’s all well and good, but I then have to manage with that until week 36 until I see my obstetrician again to start making birthing plans.

I am so grateful for my other half, he is being so helpful and understanding, and equally isn’t treating me like a patient! I still have to ‘do’ about the house, there’s no being waited on in this house! Which I might moan about at times (in jest), but I am hugely thankful… I don’t want to be sickly, or get into a ‘sick’ role, I just sometimes need support, and that I have in abundance (and the fact that the dishwasher, washing machine and dryer get filled and emptied now makes my life a little bit happier!!).

**I’d love to hear if any of you have any thoughts on the steroids and muscle pains/tendon pains and coming off the steroids after an extended period of time? Part of me keeps wondering if the battles I’m having now are a little of my own making for taking the easy route?

 

Me at 23 1/2 weeks...

Me at 23 1/2 weeks…

Food! Glorious Food!….. Sorry I couldn’t help it! :-)

So… food.
I haven’t posted for a while as initially I was in charge of the household whilst Andrew went off on a stag do. So I was busy busy keeping the pooches fed and walked!! So my pacing had to eliminate the bike rides and take on the morning and evening walks. But that’s pacing!
However, following that weekend I was unable to conjure up the energy to post as I was struck down by diarrhea and vomiting….. Nice, I know. But interestingly, over the few days I had off work recovering, my RA was a lot easier (not better, but easier). So what was the cause? Coincidence? Lack of work? Or change in food intake?
Now I have looked into food and RA before, but I have been reluctant to massively change my diet for a few reasons. 1) I eat well and healthily, but I do enjoy my food, and the odd treat. 2) I personally feel that once you start with ‘intolerance to this’ and ‘intolerance to that’ you open up more problems (perhaps I’m wrong!), but I have always believed that a little of everything healthily balanced is what maintains and prevents intolerances/allergies. And perhaps I’m way off (or not, but looking at this point from the wrong angle) and it is just my one opinion from observation, but 3) people I’ve met with intolerances/IBS/ulcers often have chronic pain illnesses** and often suffer with low mood. Big sweeping statement I know, and I will be happy to retract it at any time, but currently, from my experience those patterns have come up time and time again ***.
Now, as I say I am happy to retract my third point, well, both my points regarding intolerances (obviously not the one about me loving food… as I do!! A Lot!!), and I am looking into the whole thing with a little more purpose now. Because having not eaten for 2 days during my illness, I was soooo much better (not a totally scientific start – as it could have easily been the extra days off work, I know work adds to my pain as Saturday is generally my worst day of the week)!! Unfortunately, going on a volitional fast and slowly re-introducing foods gradually keeping the worst offenders off the list for the time being….. Not exactly what I want to be doing whilst busy growing a baby!
It’s a really difficult decision to make, especially since I don’t really think that anyone in the world knows the answer, is it better to provide the unborn developing foetus with vitamins and minerals from a wide variety of foods from all food groups, but risk the fact that some of these foods may be making my rheumatoid pains worse, or do I eliminate vast food groups, possibly depriving my baby from certain vitamins/minerals (I just don’t know) during some of the most important months of its newly formed life… but at the possibility of helping rid myself of some sever and debilitating pain… (Which may help the foetus in different ways, e.g. less pained/stressed mum to be) I don’t think anyone knows the answer, I don’t really think anyone knows really what our recommended daily/weekly/yearly allowances actually are? Especially at such vastly different times of our lives such as during pregnancy and during disease?
Plus… Food makes me happy!! Especially all the foods that I consistently see as bad for RA… Dairy, meat products, sugar and gluten – although I think I could manage without gluten without too much heart ache, and I’d like to live without sugar… but dairy…. Meat… especially the badly thought of red meat… oh steak, how could I live a life without another steak? Or cheese? Oh it makes me sad just thinking about it! I could go on about how food makes me happy all night long, but I could also go on about how sad RA makes me (even had a little cry last night)…
If the food issue is indeed adding to my pain (which I won’t know until I cut it out) then I’d have to make a decision, a very difficult decision… what do I want more, and I guess I would have to choose health (but can you believe how uncommitted that sounds!! That is how much I love my food!).
I feel a little bit like I am in the ‘evening stages’ of a bad relationship, coming to terms with the idea of separation, but not yet able to cut all the ties… but in some way I can see it coming. I’m just not sure when yet…
So, any thoughts from any of you out there regarding diet and pain? I’d love to hear of the changes you’ve seen, and what has helped? I know lots of people will have taken these steps, and had different results, please tell me about your experiences! It might help me make my decision…

 

 

 

**(I know, I know… RA is a chronic pain problem! But I have never viewed it in the same bracket as ‘Chronic Pain’, patients with RA don’t have the same pain behaviours as ‘Chronic Pain’ patients – maybe it’s because with RA the patient has a diagnosis, and therefore, can accept the pain and cope/manage better than someone who is continually looking for a diagnosis and no practitioner or consultant can give them a name for their diagnosis apart from ‘Chronic Pain’.)
***Perhaps my snap shot of the population is skewed as those that are out there managing and living with their intolerances/IBS/chronic pain, are the people that I don’t see!! And it is the people that need help with their management that are suffering with depression, understandably in many cases when you hear their stories.

Being pregnant…

I’m in the midst of writing a post about food… It’s taking some time, probably because I’m still trying to work out what it is I’m trying to say!!

However, I just thought I’d post a quick note so I can look back and remember what I was feeling!!
I’m loving being pregnant!! 😀 I’m 19 weeks (21 to go…!) so nearly half way. It does seem to be taking forever, but I know in November I’ll look back and wonder where the time went!!

If it wasn’t for the pain, (which I won’t go into too much here…) it would be a doddle! I’ve had a bit of nausea, but nothing too dreadful, and yes I was worn out in the first 3 months… Plus the addition of worsening fatigue due to the sudden lack of meds, but overall, it’s not been tough at all… Now I know it’s going to get harder, and in another 19 weeks I might be thoroughly fed up with it all, but so far, so good!!

Bump is coming on nicely, some of that may be the food I’m so in love with mind you, but everybody I meet keeps telling me how tiny my bump is for 19 weeks, which makes me think that, despite my reduced activity over the last year due to my lack of meds and increased pain, perhaps my core musculature wasn’t as bad as I thought it was!!* I’ve always been pretty content with my body, the usual gripes everyone has, but overall I have liked myself, and I know I am lucky for that (plus grateful to my mum!), but at the moment as I see it changing, I love it even more!! What an amazing thing nature is!!

Anyhoo… The cricket highlights are on and it’s nearly bed time!!

🙂

* it certainly isn’t as good as it was, but the dog walking and cycling and general busyness at work must have maintained something!

To cycle or to row… That is the question!?

21/05/14

So, in my last post I stated what a poor patient I was to myself as a Physio, and that I intended to improving my pacing.

Well, the following day (Tuesday) I had a day off work to go to my rheumatology clinic appointment ( the hospital being a 2 hour drive away). Of course that was a good day… But why? Because I got up, had breakfast, cleared the kitchen, and went upstairs for a shower… No rush, no haste. That extra long shower eased so many aches, I then attended my appointment had a good chat with the doctors and a management plan was created for the coming 6 months, I was happy. I had their number if there were any problems. I drove home.

After having a bit of food, I took my own advice and by 15.30 I was out in the sunshine on my bike. I only did 30 mins, two short laps of the local village, but I loved every minute! The wind in my hair, the sun on my skin, the muscles in my legs working. Yes my knees hurt a little, and my wrists and fingers made changing gear and braking a little tough… But that’s what exercise does to you, you don’t focus on the pain, you feel the enjoyment… Granted if it had been a miserable day and I was on an exercise bike in the gym, I don’t think it would have had quite the same effect, but thankfully it wasn’t and I wasn’t!

So, Tuesday was a good day, why? (Oh I also took the dogs to agility, but that was pushing it a little too far, so Andrew did the running around for me! I’m not superwoman… Yet!)

Was it because:
1) I was off work? It certainly relieves a little of the stress of a morning, even if I don’t feel stressed most mornings
2) I had a long shower (10 mins-ish, but I wasn’t clock watching because of 1)!!!
3) My clinic consultation felt worth while, I had a plan, and felt supported
4) I paced my self through the day, not overloading myself with ‘to do’s’
5) I got out on my bike and released all those endorphins that have lay dormant in me for so long
6) It was sunny

It could have been any of the above, and more likely a combination of all of them, but, that’s not a typical day for me, 5 out of 7 days I’m in work, the luxury of pacing such as the above isn’t afforded to me. But, what I am making a mindful effort to do, is give myself time, don’t stress about things that aren’t getting done (they will do eventually… I hope), and drip feed in a little more exercise here and there….

So what happened today, Wednesday…. Well, the first difference is, I have started a short descending course of Prednisolone. 10mg today and for the next 3 days, descending by 2.5mg until nothing, 16 days in total (following on from the clinic appointment on Tuesday).
I also retuned to my usual 8.30-5(ish) job on the ward. No huge changes to pain early in the day, but definitely an improvement as the day progressed, which can be very normal for me, as moving does help enormously, until i stop!!
It has been a glorious sunny day all day, so I have been dying to get into the garden… But I also felt I aught to do something exercise wise. I could have convinced myself, that as I am pacing myself, there would be no shame in resting today, and returning to it tomorrow, however, I am 29 with a previous level of fitness that means I could easily do a little something (stop talking yourself out of your own advice!).

To cycle or to row? It’s been hot, the rower is in the gym… It is stifling in there… Back on the bike it is… GOOD GRIEFE my bum hurt! I had to do the first quarter in standing! But it eased, it got easier, I could sit for short periods, but I decided I’d only do one short lap of the village…. My knees felt better, my wrists felt ok (still twinging), but I was determined not to over do it. The joy I got was still the same though 🙂

Since my sore bum shortened my ride, I decided to do a short burst on the rower too… My aim is to maintain strength and tone in my arms and back, not to become the next Mathew Pincent, therefore I did 50 rows in pronation and 15 in supination (to get my biceps… I had aimed for more, but my right wrist has been so bad I seem to have lost range in supination, and I found it particularly awkward, something else to monitor and work on).

But… As any poor pacer/patient would do, why stop there?! The garden is getting wild, so I whipped out the mower and did the grass, then hung out the washing and put on a white load…… Well, in one sense it’s pacing, they are all different activities using different muscles and different postures, not one of them took longer than 30 mins in total…. Let’s see how I go for the rest of the week!

So, on reflection, what has changed….

Yes Prednisolone does work wonders for me, and always does, there are side effects possible when pregnant, but they are small, and on the whole better than other medications, plus a mobile, stress and pain free me must be kicking out more favourable hormones for mini me?! – But could Prednisolone really have worked so quickly…. I look at my joints and I’m inclined to say yes, I guess we will see in 8plus days time when the dose reduces to what I have found in the past to be non therapeutic for me.

Is it my determination to act? To take a stand and do something active about this pain that limits me? I know pacing itself doesn’t ‘work’ after two days! So how much of the change about me is psychological? I’m afraid to say it is probably a pretty huge proportion, again, we will see in a few short days as my Prednisolone reduces, if I gradually get worse it’s the drugs, if I remain well it could be the drugs, it could be my mental attitude and my mental state. Only time and effort will tell. I don’t doubt there will still be tough times ahead no matter what, but there will be good times too.

Peaks and Troughs of Activity

As a physiotherapist I always prided myself on my ability to empathise with the patient. To be able to talk on a level about chronic pain and pacing, the do’s and don’ts, the reasoning behind it, and the need to avoid peaks of activity followed by troughs of inactivity and pain and the downward cycle of deconditioning.

I felt able to use myself as an example of it working, and of pacing’s benefits. But perhaps I never appreciated how much of a pivotal role my pain management played in my being able to achieve appropriate pacing.

Of course, I knew how important pain medication and pain management was with pacing. I regularly encouraged patients to go back to their doctors and consultants to discuss better pain management. But I think I lost sight of how much my medication was helping me! Until I had to stop taking it!

Over the last year, since stopping the methotrexate and just being on the Etanercept (Enbrel) my pacing has been POOR! My lifestyle and my pain levels don’t match well at present, and it has taken me a whole year to be able to look back and appreciate this… I am a rubbish patient, I have always been a rubbish patient, I have never taken my advice well, but now I wonder, if it’s about time I started to listen to myself.

In the past year my activity levels have plummeted due to the pain and exhaustion of a full day at work. I have managed little more than two dog walks a day, and that has now dropped to one more often than not. I have deconditioned. I am now feeling the effects of the deconditioning – Right Achilles tendinopathy, Right anterior knee pain, the list could go on – hills and steps have become my nemesis…. I’m 29!!!

For the last two months I have been giving myself exercises to combat these secondary problems… but like a bad patient I have done them infrequently, and therefore they are useless.

I feel that at the moment, work is my peak of activity, I have exhausted all I have by 4.30pm, and my trough of inactivity is the evening. My feet throb from being stood up all day – I want to sit down, then I seize up and struggle from the chair, my hands scream from holding, supporting and facilitating people all day – I don’t want to hold or touch anything in the evening. And the rest of me aches and feels heavy and difficult to move.

I know however, I have to start doing something to break up the inactivity of the evenings, I have loads of options easily to hand… cycling, swimming, rowing – all low impact, with the benefit of strength and cardiovascular fitness. Of course I know this! I’ve suggested those and many other activities to hundreds of patients… I’ve just got to listen to my own advice!!

So… the plan is… well, the plan is still forming! But I’m going to, I have to, get more active in the evenings… Ideally I’d get to rest a little in the day, but that’s not going to be possible, so instead I have to manage my time in the evenings better, relaxation can’t be on the settee… as I can’t get up again, and going up stairs to bed becomes a 10 minute ordeal. Perhaps going swimming, or pregnant yoga, or out on the bike… my problem is, I’ll miss my pooches, I have to cook dinner at some point… and will I burn myself out? People keep telling me that as a pregnant woman I should be getting some rest… it’s going to be a work in progress!

In the meantime, I’m waiting for an appointment with a colleague, so I have someone else telling me this stuff!! It’s a lot harder to ignore someone else, it’s very easy to talk myself out of doing things! Although that’s a trait I am working on.

And finally, what better motivation to stay in shape and find ways of pacing myself now… because in six months’ time, I’m going to be looking after someone else too, time management is going to become imperative!! And I know myself, if my muscles weaken, and my joints don’t get their support, on top of additional weight (both baby and the odd cake!) it’s only going to make my life harder!!

 

Welcome to WordPress!!

Hi there!! So please bear with me, this is my first ‘blog’!!

I’m Nina, I was diagnosed with Rheumatoid Arthritis in 2007, I was 23, it wasn’t a huge surprise to me, I had just finished a physiotherapy degree, so I was pretty clued up on the early symptoms, so when I went to my GP with pain and swelling, I think he was more surprised than I was at the blood results. I was, however still pretty devastated, which thankfully once on the right mix of meds, ebbed away.

I didn’t ever think about blogging about RA, I didn’t have much to say, I was well controlled early on (after a rather shaky start**), and had a career and a life to be getting on with!! In fact I didn’t know much about blogging until very recently (and I still don’t know much at all!) when I met a colleague who was blogging about her life here in the UK, following a move from South Africa. This piqued my interest… but only over the last 3 months have I really seriously considered writing my thoughts down.

So what happened 3 months ago? Well, it actually started last May (2013). When my other half and I decided we were finally as ready as we were ever going to be to start a family***. I was, at the time, pretty well controlled by Methotrexate 25mg, and Etanercept 50ml injection once a week, and to start the planning of our little human, I stopped the Methotrexate.

Straight away I noticed a difference, but I put up with, and managed myself with the addition of NSAIDs (Non-Steroidal Anti-Inflammatory Drug) until October. I had decided to be off the Methotrexate for 6 months, rather than the 3 months suggested by the consultants, because I wanted to be sure it was clear of my system…. (I think if I were to do this again I will look a bit more thoroughly into the evidence behind the recommendations, as six months was tough!). In October I got in touch with my consultant and the addition of Prednisolone helped me cope enormously! Steroids really can be magic…. Forgetting about all the side effects for a moment!!

Along came February… and the news we were all hoping for!! I was PREGNANT!

So here we are, 15 weeks in, due in November… all meds stopped 15ish weeks ago… No steroids, No Etanercept, No Methotrexate… exhausted, worn out, and in pain.

And this brings me to why I’m here, I have been looking for an outlet for all my thoughts and feelings at this time of my life (which I have A LOT of!!) and hopefully connect with other people that might be going through the same dilemmas, highlights and lows. Since deciding to take this on, I have discovered that there are LOADS of blogs about RA, and I am only just beginning to scrape the surface of them… I wish I had known about them over the last 7 years of my life… I might be far more educated and informed than I am now…

So, my fist blog completed…. Let’s hope I manage a few more!

 

 

** Initially I was prescribed Sulphasalazine… which did not agree with my liver AT ALL!! So apart from being in pain, I was very unwell, but thankfully, a change of hospital, consultant and DMARD (Disease Modifying Anti-Rheumatic Drug), and I was well on my way to being very well controlled for the best part of 5 years

*** well, add a little human to the house hold, as there is already the two of us, two pooches Riva and Zeus, and two Yellow Bellied Sliders George and Gonzo – photo’s to follow!

 

Waiting patiently on a picnic break in the hope of a buttie!

Waiting patiently on a picnic break in the hope of a buttie!

 

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