RA and Cachexia: Just had first, very lengthy and... - NRAS

NRAS
27,165 members31,180 posts

RA and Cachexia

RosieA
RosieA
55 Replies

Just had first, very lengthy and informative appointment with physiotherapist. Although only diagnosed in October and main symptoms have been hand joint involvment and fatique I was very impressed and gratified to have this opportunity. One of the many things I learned was about cachexia -a complication of RA. Cachexia is muscle loss and strength with concomitant increase in fat mass. I'm sure you all know about this, but it was quite salutory news to me. If this is something you know about or have struggled with can you let me know what you have done about it, advice you have had. The more ideas the better. I am being enrolled in a strength and conditioning course run by the hospital. Am still walking the dog etc but can feel change in body as a result of having to rest more. Am thinking of getting a cross trainer!!

55 Replies
oldestnewest
helixhelix

Yes, I am always asked by rheumy, physio and cardiologist about exercise, and encouraged to increase it. I do struggle tho’ at times. And now10 years i to diagnosis and 10years older I know I am not as strong as I was despite daily exercise.

Do let us know what the strength and conditioning course is like, and what exercises they do. Would love to have something like that. Especially so quickly after diagnosis as hopefully will stop things in their tracks. Sounds like a good physio.

4 likes
Reply
RosieA
RosieA
in reply to helixhelix

Yes very impressed with physio and know ultimately success is up to me. I will let you know what they do. I have been informed that there is quite a thorough baseline done to show impact of treatment.

I have since read several papers on this. Am interested in the rate of lean muscle loss even when resting - and of course the impact on cardiac health. Some interesting thoughts also on BMI not being a strong indicator as weight may remain stable, but in fact lean muscle being replaced by fat. Just another thing to get my head around. In quite a short time I have suffered loss of lean muscle in my hand so must assume RA is insidiously doing its thing elsewhere.

Will keep you informed.

May I ask what daily exercise you do?

1 like
Reply
helixhelix
helixhelix
in reply to RosieA

4 days a week I try to do cardio exercise as have heart issues, not that easy when can’t run, jog, row, or bike so I walk as fast as I can I up steep hills.

2 days a week I do pilates, or similar, and a more gentle 5km walk or similar.

And I day a week is post-MTX day, so I do nothing....

2 likes
Reply
RosieA
RosieA
in reply to helixhelix

Thank you. Sounds as though you are doing the maximum possible for you. I need to up my game asap.

Reply
KittyJ

I’ve never been told of this although obviously I know I’ve lost muscle and strength. Never been offered a course either 😔

7 likes
Reply
RosieA
RosieA
in reply to KittyJ

Perhaps ask your rhuematology dept if they offer it. It's a 7 week programme led by specialist physios at the hospital. There is quite a lot of information on the net about cachexia and RA. In all my reading around the disease I had not come across it. Most researchers suggest that it less talked about but does affect a significant percentage of us.

They might have thought I was at risk in some way. I have already got some loss of lean muscle in my hand (in quite a short time). Just to think one year ago I was in blissful ignorance of how 2019 was going to change my life!!

Do let me know if you manage to get some support for this.

Reply
KittyJ
KittyJ
in reply to RosieA

Thanks Rosie, I’m not at the clinic until June so I will try and remember 😊 I don’t read about RA really so maybe that’s why I haven’t heard of it .

1 like
Reply
AgedCrone
AgedCrone
in reply to RosieA

RA will only change your life if you let it....your hand could quite likely be. the only muscle loss you will notice.

Trust your doctors & get on with your life. People here do not let RA take control of their life on a daily basis......even those badly affected.

When a flare appears we deal with is as best we can.... but otherwise live your life as before......worrying what is going to happen tomorrow is pointless.

2 likes
Reply
LancashireRachel

RA can affect you badly despite continuing to exercise for as long as you can. I find that post to be ignorant and insulting tbh. Please do not assume your experience is universal.

Reply
AgedCrone

I don’t assume anything..

How can it be insulting to tell the truth? Where do I say anything about continuing to exercise? I was just saying don’t just accept.

Of course some people are very badly effected by this disease....we have probably all gone through very bad times,

But surely one should not just sink back in to acceptance that how you are today is how you will be tomorrow?

The newly diagnosed need to be given the full story....it is a rotten disease .... but I repeat nobody should just give up....there is always hope that you will find a treatment to help.

If I told you of my experiences you would probably not want to be me.

But if that is how you feel...read how the brave people here who continue to bounce back& refuse to be beaten week after week & year after year.

I am sorry if you are in a bad place right now...but please don’t tell me I’m Insulting or ignorant .....because I’m not.....

2 likes
Reply
Chongo
Chongo
in reply to AgedCrone

Well said, AC.

Reply
AgedCrone
AgedCrone
in reply to KittyJ

Everyone loses muscle mass as they age...even athletes!

Reply
helixhelix

Cachexia is a bit different....even for athletes.

2 likes
Reply
AgedCrone

Yes but the underlying cause for extreme Cachexia is usually as the result of diseases like MS , Acute Renal Failure, HIV & Cancer in the advanced stages......I have spoken to Rheumatologists who have never treated their RA patients for it.

Reply
J1707

No I’ve never heard about increase in fat mass very interesting. I did know about muscle loss. I see I’ve got a bit research to do this answers a lot of questions. Thank you . Please post how you get on.

1 like
Reply
RosieA
RosieA
in reply to J1707

Will do. It's an area of interest as family history of heart disease. As have some loss of muscle and strength apparent in hand after quite a short while so it seems not a big leap to realise it may be happening insipidly eslewhere. So it's exercise for me. Also reassuring to read that if none sensibly it does not damage joints and can reduce fatique.

Reply
J1707
J1707
in reply to RosieA

It gets more interesting I have an extensive family history of heart disease

1 like
Reply
RosieA
RosieA
in reply to J1707

Please let me know what more you find out from your reading or in discussion with rhum team if applicable. If I find a good reseach doc: I could always give you the link if you wish.

1 like
Reply
Lolabridge

I have never heard of it but will now research it. I’ve done little exercise for 18 months due to joint problems (especially ankles and knees) from RA so now it’s coming under control I need to get moving again. Thanks for the info!

Reply
RosieA

Your welcome. As I have replied to J1707 it's an area of interest. So glad the physio is on the ball!!!

Reply
AgedCrone

I have had RA for 20+ years & no sign of Cachexia...yes have lost some muscle strength...but of course I will..... I am 20 years older. Prior to diagnosis I played tennis for three hours most days....so was reasonably fit.

I remember mentioning it to my Rheumatologist a few years ago, & he said although some people with RA are affected ....it is more serious in cancer patients.

Unless you are so incapacitated by RA you can’t do any exercise at all.... I doubt it will be a major problem.

As long as you keep moving...which if you are walking your dog, & no doubt doing housework, & gardening & you say you are seeing a physio.....It sounds as if you are not very likely to be affected by it. Everybody loses muscle mass as they age.

If you can swim & maybe join some sort of exercise class that will help your joints.

If I were you I would stop reading about all the nasty things that can happen to you with RA...if you see your rheumatologist regularly and speak to your rheumy nurse if you have any problems..... that is all the attention I pay to my RA...don’t look for problems or you will think you have found them

4 likes
Reply
RosieA
RosieA
in reply to AgedCrone

Let's just be clear. I have looked into this as it was mentioned by a specialist physio. I feel that learning about it enables me to know what to do to help myself. I am not looking for the nasties but merely empowering myself to stay as healthy as possible. I posted asking if anyone has heard about this and seeking guidance for more experienced members. I am not looking for problems but solutions.

7 likes
Reply
AgedCrone

I was only pointing out when you have only been diagnosed for a couple of months ..& are apprehensive about the disease it is normal to dive into Dr Google & worry that everything you see that sounds remotely like something you are experiencing...is applicable to you.

Your rheumy physio probably explained it to you as you were concerned about your hand...& there is nothing worse than having patients worrying about something unnecessarily.

As I said....see your Rheumatologist & your rheumy nurse, have physio if you need it.......and get on with enjoying your life as best you can.

RA is a nasty disease.....but once you are controlled by the right drugs for you, unless you have other medical conditions there is no reason to think you will develop any of the more serious conditions associated with it...& no reason not to live your normal life.

But don’t buy that cross trainer until you have discussed it with your physio.

3 likes
Reply
Stayloose

I think it's great that you've been referred to this exercise group, regardless of the suggestion of Cachexia! My OH (who has RA) was skinnier than a rake after time ventilated on ICU. He was discharged suddenly with no follow up whatsoever so has seeing a private physio for general conditioning, He does mainly Pilates style exercises and low weights. I'm into home exercising so also encouraging use of the Gym ball. We go for a walk every day, but it's too cold/wet to pause for long in the winter I can see not everybody could be referred to a class, but a baseline assessment and advice would be great. The NHS isn't renowned for being holistic and if you don't ask you don't get. The affect of oral steroids can also cause muscle loss and fat gain and takes a while to resolve. Re muscle wastage in your hand, I have this from unjury and subsequent OA. I saw a hand physio and use therapy putty daily.

3 likes
Reply
Stayloose

Oh, and exercise bands are good for upper body strength

2 likes
Reply
RosieA

Many thanks for this positive response. I think the physio was bringing it to my attention rather than diagnosing me with it. But now being aware it has made me understand why certain types of exercise would be so very beneficial. I always need to understand in order to be motivated (an annoying trait in myself) Yes I am lucky to be given this opportunity. I have started my hand exercises but must look into the putty. I had forgotten the impact of steriods and as I already have low bone density after very early menopause some light weight work will be beneficial too. Have got the bands and they have already started to help with tendon problems in the foot.

I do so hope your OH is gaining strength and his health and many thanks again for your support and suggestions.

4 likes
Reply
Hisue

Developed Cachexia from side effects of meds for my sudden onset RA. Discovered a year later that one of the meds - minocycline- was causing side effects of extreme joint pain & loss of appetite & Rheum was clueless- Said it only caused photosensitivity.

Reply
RosieA
RosieA
in reply to Hisue

Oh dear. I do hope you are starting to recover from this. Best wishes.

Reply
Hisue
Hisue
in reply to RosieA

TY. I never imagined that an antibiotic could do so much harm- and I was on it -200mg every day-for RA treatment. Much damage done. Still in bad shape.

Reply
AgedCrone
AgedCrone
in reply to Hisue

Not many rheumatologists use minocycline in the UK...it was trialled back in the 60/70’s but it never really took off here.

Reply
DelicateInput

I read somewhere recently that those with RA have a higher fat to muscle ratio than those without it. Can't find the article now but it did not attribute this to inability to exercise. My weight is increasing, and I am beginning to feel fat yet nearly all my life have been very slim and lost weight easily I've had RA since 2014.. I still go to the gym and swimming but have only managed once per week since August as I started a new full-time job with long hours. I'm 71 so it is hard going.

I am getting signs of RA back in my shoulder. I find swimming the backstroke helps enormously but my gym is crowded out with kids nowadays. The best time to go is late evening so I try on Sundays and am going to try on Fridays when it is almost empty. Aqua aerobics is quite good.

I don't take anything for RA - I can't get my Chinese tablets any more and electro acupuncture has become expensive (£80/hour whereas in 2015/16 I only paid £30), and it is difficult because to start off the course you need two sessions per week and I just can't get there when I am working full-time. It is a nagging worry as to what lack of treatment is doing to me, such as increased fat ratio which must lead to heart disease. I don't trust the drugs like methotrexate and my understanding is that you have to take it to get access to biologics or better drugs.

I've been waiting since last July for an appt (re-referral by the GP, not my request). It is all a complete joke and I wasn't even bothering to go to the appt they had fixed for next April. However, they rang me yesterday with a cancellation. One wonders how seriously RA is taken when people are kept waiting 10 months without treatment for an appt. I had to wait six months after the first referral.

Reply
AgedCrone

Speak to your physio ......in a lot of areas there are NHS therapeutic pool and that you can use that aren’t full of kids.

Reply
DelicateInput

Thanks, I'll try. I am working full-time now though so need to go at weekends and evenings. There is a branch of my gym (Nuffield) round the corner from where I work but on a Friday night I am too whacked out to go, after working all day 8.45 till 5.45 without a proper lunch break.

Reply
AgedCrone

Have you thought of doing what a lot of people do ....paying for a private consultation with a rheumatologist to get you started on some sort of DMARD? Then once you are on treatment transfer to his/her NHS list whereby you will have a rheumatology nurse you can contact for advice on drug monitoring.

Reply
DelicateInput

Yes, I was considering it as I could not get an appt till April, then the hospital rheumatology dept (not the booking service) rang and said they had a cancellation this month. I was in two minds whether to take it and they called me back later in the day to find out.

What put me off going private is that initially I saw a rheumatologist in Harley Street who diagnosed gout on blood test results without doing any imaging. Many private specialists either do not work the in the NHS or else are prohibited from letting private patients use NHS facilities. This one had retired from the NHS.

Thus, if I saw my NHS rheumatologist privately, I would have to pay for all the tests. My main reason for seeing him is that I want to know how I got this. I have always been prone to allergies (eg cosmetics, substances, insect bites). The year before onset I was badly bitten by green gnats and I suspect that triggered the RA as an allergic reaction. The bite swellings and marks did not go down for nine months ... and then I got RA. Anti histamines take the swelling in my hands down and also relieve pain. Of course, I was told that was nonsense - the rheumy laughed and the GP said there was no medical reason for the anti histamines. Prescriptions ones are the best. Now the GP says a lot of research has been done and histamine does play a part but it will be years before it is conclusively proven.

I'll have to think about it.

Reply
AgedCrone

Unfortunately I don’t think you will find out what caused your RA... either Privately or on the NHS........in the near future.

So it wouldn’t really be worth paying to see a rheumatologist privately to ask something that he is probably not going to be able to answer........even with a lot of unusual, costly tests. ..which as you say you would have to pay for........ which with consultations and tests can run into £thousands.

Outside events could have had an effect on your disease, but as I am sure you have been told many times ....rheumatoid arthritis/disease is an autoimmune disease which comes about when your immune system thinks it is being attacked and goes into overdrive as a protective measure..... whereas it in fact needs controlling....hence Dmards.

When I moved house & transferred to my present rheumatologist about 14 years ago one of the first things he asked me was did I have allergies as a child......from this he presumably based a lot of the tests he performed to decide which drugs he would put me on next.

I had already been diagnosed with RA years before and had started the route march of the Dmards we all try.

In fact what most patients do is collect up their imaging results and their blood test results done on the NHS, and then go to see a private rheumatologist who can then see where to start from ......when he transfers you to his NHS list. You speak to the Rheumatologist’s secretary before you book ....asking if the doctor has an NHS practice and finding out if it open to new patients.

As you have already found out - Rheumatology is a much understaffed specialty and waiting times are long.... I would hang onto that April appointment until you have made alternative arrangements and know that you can get on another rheumatologist’s NHS list.

But I would try to get my disease under control with tried & tested RA drugs before I concentrated on finding out how I got it in the first place.

If damage is already occurring in your joints there is no going back... you will read on here quite a few people did try to manage without any RA drugs they now admit they are paying the price for not getting it under control earlier

.Wish you well in finding a suitable rheumatologist ASAP.

2 likes
Reply
DelicateInput

Thanks for all the info. My problem is that the drugs I have tried have caused damage far worse than the RA, eg breathing difficulties and chest damage, stomach ulcer/chronic. I can't exercise properly because of the chest problem and the stomach ulcer is very painful. I've tried taking Omeprazole for that but on every occasion I have got a flare up of a stomach bug. I even had some retinal damage but it is not clear if the drugs caused it. I also have a rapidly declining kidney gfr rate and an abnormally high red blood and uric acid count.

The rheumy did not want to give me the drugs as he said I would not tolerate them, my age being a factor. You can see why I am hesitant. He said to just keep going to the gym - easier said than done in the circumstances.

My next door neighbour came in for a drink over Christmas and I was astounded when she declined a New Zealand Marlborough white wine Sauvingnon Blanc as she is allergic to it. She said this is because it is made with pollen. I have a high allergic test reading to a wide range of tree pollen. White wine makes the RA worse, but it is unaffected by red wine which contains an anti inflammatory. Champagne is OK as well. Beer is just dreadful.

There seems to be a lot unknown about RA which nobody can be bothered to find out. I am wodering, with its diverse range of symptoms in individuals, whether it is not an umbrella condition for a range of inflammatory arthritis.

I had a very good response from electro acupuncture and Chinese herbal medicine. The acupuncture is now expensive and I can't get the tablets, so when I can find the time and money, I had better opt for the acupuncture. It is available on the NHS but not the electro type.

Another neighbour of mine, who I have mentioned on here now has Stage IV terminal breast cancer which the oncologist said was triggered by the methotrexate she was taking for RA ... only for a year. You can see why I am not keen on these drugs. It really is poor that people have to try methotrexate before they can progress to other drugs.

I think the autoimmune theory is questionable at best.

Reply
AgedCrone

I think you will find the auto immune system theory is pretty well proven world wide.

I am on a drug which kills certain cells for a period of time which tricks the immune system into thinking the system is is not being attacked & therefore improves symptoms...& other drugs have the same effect in a different way. But apart from a few allergies I have no other underlying health problems.

However I do question the tests that “prove” allergies. ......when I had the tests my worst reaction was to Silver Birch Trees...but I lived in a wood of those trees for 6 years & had no problems at all.

Maybe it is due to the other conditions you have....but on the whole you can certainly try other Dmards before you can be prescribed Methotrexate.

But it is true that you have to have failed on Mtx before your rheumatologist can apply for funding for certain Biologic drugs.

I had been diagnosed six or seven years before I went onto Mtx

having been on about 3/4 other Dmards...& I’d had breast cancer before I had even heard of Methotrexate ...but I was still prescribed it & I did very well on it for 7 years. I don’t think anyone has ever proved Mtx has caused breast cancer......after all...I have no idea what caused mine.

As we keep saying, this disease reacts very differently in each person,& you are particularly unfortunate in that you have a few other conditions to consider.

1 like
Reply
DelicateInput

Thanks. The allergy tests are pretty accurate. Tree pollen is very fine and I was unaffected by it until 2009. The reason then was an increase in pollution which makes the pollen stick round the eyes, nose and mouth. I certainly have all the symptoms of allergies including urticaria, stinging eyes, sneezing, coughing, breathing difficulties, etc. I am not affected outside London even when walking in parks with masses of trees but the instant I step off the train at Euston, it is set off. If I wash my hair every night and change the pillow case it is massively reduced.

My other conditions are probably on account of age but the stomach ones were caused by Quinoric and Naproxen. I am allergic to various drugs including Prednisolone and other steroids which cause urticaria and dreadful itching. I can't shake off a simple stomach bug because Omeprazole, which is used to treat it, appears to reduce stomach acid and then the infection flares up.

Not everybody appears to be treated in the same way. Some people get an appt in a week or two and others are left waiting for a year - entirely contrary to NICE and NHS rules. No doubt, if I had been seen sooner, the RA would not have progressed the way that it did. It is all a bit late now so I have to find my own solutions. I am just going through a temporary difficulty working long hours.

My neighbour's oncologist said the breast cancer was triggered by the methotrexate so it is hard to dispute it. She has no cancer in her family.

Auto immunity sound pretty much like an allergy. I'm not sure it is accepted worldwide and I am sceptical, just as I am sceptical of all the suggested causes of cancer. Many cancers are caused by viruses and I think it is likely RA is either caused by a virus or an allergy.

Reply
LancashireRachel

As Cancer research seems to be the basis of most progress in treating autoimmune diseases I wonder if autoimmune conditions are triggered by different things as cancer is - an immune system triggered into hyperdrive rather than a cell replication process being switched on into hyperdrive.

They aren't going to solve it anytime soon as I don't think there are enough people bad enough for drug companies and researchers to put much funding into it.

Reply
RosieA

You are certainly having to wait a long time. It does seem a bit of a postcode lottery at times. I started MTX injections and folic acid straight after diagnosis and apart from a bit of brain fog the next day have not suffered any side effects and I think you are right in your understanding that there is usually a progression in drug regime.

My limited understanding is that with RA your loss of lean muscle is potentially accerlerated, taking into account the natural effects of aging. Hence, going on this stengthening and resistance training to set me up for maximising the impact of exercise.

I do so hope your appointment comes soon and helps to alleviate your conerns about medications.

1 like
Reply
Minty1972

Interesting on body fat weight as I have always been around 14%

Good luck on finding a pool, maybe you will have to join a private health club

Reply
DelicateInput

Hi - I've never been that slim even at 7 stone (5ft 3ins)! I used to be about 24% but the last few years, it has ballooned to 33%. There are a number of reasons for it, including chest problems meaning I cannot exercise as well as I used to, but I am suspicious that RA is one of the causes.

Forgot to say, my mother had serious atherschlerosis. She had RA at 31 but was only treated for it for six months and it cleared up. She never kept still which might explain the lack of joint damage and RA symptoms but I do wonder whether the RA was the underlying cause of the arteries hardening, which started seriously at age 62 and she had awful health after that until she died at 80.

Reply
DelicateInput

Meant to say, I have been a member of the same private gym for 15 years and used to go three times a week to do the gym and swim pretty well any time I wanted. It was Virgin but has been take over by Nuffield who have filled the pool up with swimming lessons and kids' playtime. I feel as if I am going to a hospital clinic rather than a gym. They have turned the beauty salon into a physiotherapy suite and are forever plugging health tests and blood tests - I could get all my tests done there, for a fee of course. There isn't an alternative gym near me other than the local authority one but, again, they conduct swimming lessons all the time.

Prior to that I belonged to Esporta and Cannons, the former has closed down and the latter was near where I worked.

David Llloyd are good but very expensive and I cannot drive (because of the RA) to get there.

Reply
Minty1972

I know what you mean about kids classes now at the gyms. When I have fun times with my daughter I go to a fun pool. Nothing worse that kids classes blocking lanes, same goes for older people’s aerobic classes. I find it annoying.

I was built for speed not comfort 😝 and have always had a low body fat weight.

Reply
DelicateInput

The times the pool is free are Friday evenings and Sunday evenings so I have to work round those. Even when I wasn't working, since Nuffield took over, at any time of day and early evening except those two days, the whole pool was closed off by kids' classes.

I've never hit a problem with women's aerobics as they have only ever been a couple of times a week for an hour and do not take up the whole pool. Either the gym is making a loss or Nuffield is greedy. If ever I move, I might be able to find a gym/pool which is free of kids.

Reply
charisma

Hi Rosie, I never heard the term but it is usual practice to refer us to a Phydiotherapist ASAP after diagnosis. It is not explicitly explained why, but the reason is implicit... we have to build our strength between flares.

Interesting though, that your physiotherapist explained it all!

Hope you get into a routine of exercise/s that suit you, and thanks for posting.

Reply
RosieA

Thank you for your response. I am hoping that I can at the least reduce the acceleration of lean muscle that she described to me. I did discuss a cross trainer with the physio as my husband and I had already thought of this for us both. She responded postively to that, as can use just legs if hands are tricky etc. I think I shall be watching all of Downton Abbey again as I 'pound' away. Will be word perfect I have no doubt!!

1 like
Reply
Ailsa-NRAS
Ailsa-NRASAdministrator

Hi Rosie

I'm NRAS' National Patient Champion and founder of NRAS. I've lived with severe inflammatory polyarthritis for nearly 40 years and this is a subject which concerns me both personally and on behalf of everyone living with RA/IA. We did an article about it in one of our member magazines - I will see if I can find it and get it to you. Interestingly, in spite of better outcomes due to the treat to target strategy adopted by most rheumatology units in recent years, T2T has done nothing to improve cachexia. If you have not very well controlled disease, a lot of damage and long standing disease it can be particularly challenging to do the kind of exercise that is necessary to reduce cachexia. There is a lot of research going on in this area. Anything you can do in exercise terms however, is beneficial and better than doing nothing!

1 like
Reply
RosieA

Thank you so much for your reply. I was beginning to suspect that I was concerning myself unnecessarily. I would love a copy of the article. I am a member of NRAS but only since diagnosis so may have missed it . Even in this relatively short time I have noticed a difference in strength. I live on a small hill and going up is becomming more of a challenge and stopping to appreciate of views a greater likelihood. Just today, I have committed to starting my ballet classes again, great for balance, core strength, lengthening muscles, articulating joints but not for the resistance work I think I need to do.

The more research I read, the more it appears that this is an area perhaps getting less recognition. Saying that, some of the papers have a more international audience and my knowledge of differences across the UK let alone elsewhere is poor to say the least. I feel very lucky, in these early days of my disease , to have a physio eager to maximise the opporuntities available for me. Thank you once again, I do feel reassured by you, that I am challenling my energy appropriately and constructively. Kind regards.

Reply
Chongo

Hello from a fun loving fool from the land downunder.

I know this may get a few negative comments, but...........Go hard!

If you're an older person don't do this, but if you're younger and still have a semi fit body and mindset, then get into it.

Movement, resistance training and flexibility maintenance is the key to controlling this bloody awful disorder.

The first and most important ingredient is "This crap ain't gonna win".

You must not think of "Why me, or how?" but ,"How am l going to tackle this crud and live"!

This is how l am able to live a normal life....

For a couple of years after my diagnosis, l was feeling sorry for myself and got into a routine of doing nothing each day due to the pain. I put on 15kgs of belly flab and tipped the scales at 120kg while feeling miserable.

But, I managed to get a job where l lift about 400 to 500 bags daily of 25kg milk powder into a machine called a sieve.

The first month was horrendous, but gradually l regained my strength and best of all, fitness.

I also got back into weights, a fair bit of cardio on the bike and also some light yoga for the most important ingredient, flexibility!

I am now at my healthy weight of 100kg and feel pretty bloody good.

So, I strongly suggest you get the crosstrainer, and rip into it. You have absolutely nothing to lose.

You will ache and sweat for a little while, but then you will feel like your old self, or even fitter than ever before.

You know your own body and tolerance of pain, so you will work it out fairly quickly on when to go hard and when to take it easy.

You can also buy hand grip exercisers of all different resistances, so if l were you, l would get one of those.

The old saying of "No pain, no gain" is in my opinion is very true.

The pills, needles, or any other medication will help to some extent, but the rest is up to you.

Go for it!

2 likes
Reply
Stayloose
Stayloose
in reply to Chongo

My understanding is that in exercising the current thinking is more' no 'tiring' no gain', that it is better to do i.e. more reps of manageable weight than less of heavier ones. Guess at the end of the day it's about doing what you can/want for you. Good to hear you are happy with your progress!

1 like
Reply
bgeorgie

Wow, that is wonderful you have ben referred to a physio who sounds great! I had to pay privately for one, but was worth it. Cachexia is one of my worries: not only do we start losing muscle mass as we get older, for us with RA we also lose it through the nature of the disease.

I'm sure your physio will tell you this: the best way to preserve or increase muscle mass is by doing resistance training (using body weight, free weights or machines) and eating adequate levels of protein (the building block for muscle).

Prior to the diagnosis I had already fallen in love with resistance training and lifting weights due to the low impact on my joints. My cardio vascular health has also improved in the process, so I made it my goal to at least maintain muscle mass. For that I do resistance training 3-4 times per week (using bands, kettlebells, dumbbells and barbells) and yoga/pilates as often as I can. I adapt my workouts to accommodate whatever hurts, and I make sure I rest during a flare. Since my diagnosis in 2018, my strength has increased, I am a lot leaner and fitter, despite the usual ups and downs that come with RA.

The benefits of resistance training include:

•Reduces body fat and increases lean body mass (muscle mass)

•Helps to keep bones dense and strong.

•Increases energy levels.

•Helps you to maintain correct posture.

•Increases metabolism and helps to maintain weight.

Let us know how you are getting on.

Wishing you all the best

1 like
Reply
RosieA
RosieA
in reply to bgeorgie

Thank you and Chongo. You are both certainly an inspiration. Such excercise has never been my forte - but the physio and your arguments are very strong and I will be following suit. Very interesting that you both feel fitter even though the RA is still ever present. Bone density is so important and your point about increase protein levels is pertinent ( I noted this argument in some of the papers. I'm vegetarian (with a little fish), so am evaluating intake. Thank you both again for taking the time to respond positively and informatively. I will keep you informed once I am on the program.

1 like
Reply
bgeorgie
bgeorgie
in reply to RosieA

You are most welcome!

Soy & quorn are good complete sources of protein for vegans, but as you are vegetarian, I assume you eat dairy: the best protein source for the least calories I found during my vegetarian phase is Fage Total 0% Greek yoghurt - delicious with fruit as breakfast or as desert :)

1 like
Reply

You may also like...