NRAS

Seeing my pain

You know specialists and assessors can tell me lose weight and exercise but that all said and done isn't as easy as it seems .I suffer PSA also costochondritis which is extremely painful and the meds aren't easy to take either .They cause fatigue and other not so nice side effects so how they expect you to work commit or pay for a gym class when your in this predicament is easy to see its not really feasible .It's frustrating me which then becomes anxiety so it's not an easy condition to bare .Any thoughts anyone ?

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I feel your pain I have put on a stone in weight since diagnosed. Fatigue is the worst for me! My head tells me to exercise but I have no oomph ☹️ Easier said than done. When you feel so ridiculously tired all the time!! I go to bed tired and wake up tired.

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I just realised that the metoject pen I use every week is a low dose of chemo 😱no one told me that !.No wonder I'm like a zombie most of the time 😵I'm a bit scared now 😣

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No need to be scared. At such low doses it's known as a DMARD. Whilst it was originally developed as a treatment for cancer it was found about 30 years later that it can work on the cells which block chemicals that cause the inflammation of RD, PsA etc at far lower doses & taken weekly not daily. This explains warmsocks.wordpress.com/201...

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I’ve put on 4 stone since diagnosis in 2 years ago.

I walk at least 10 000 footsteps a day and cut down my carb intake. Eating healthy and still cannot lose weight.

It’s such a hard thing to do.

The RA meds don’t help. Methotrexate causes nausea and fatigue for 2-3 days following it.

I walk all day when at work.

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I was a full time head housekeeper and calmed miles over a day on hard floors.I worked until I could no longer get on to my feet without crying with pain.I then went to see doctor and put my sore feet down so to speak .Eventually I was taken seriously😓The MTX8tablets made me awful sick and loose bowel but the metoject pen is not as bad although my fatigue is really bad .I lol give it another 6months and decide if it's worth it .I hope your feet keep strong so you can keep working 😊

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"Side effect" of Kaiser Permanente’s dietary recommendation ( share.kaiserpermanente.org/... ) is weight loss (if over weight), Magymay. 😳 🤯

[No, I didn’t believe it, until I experienced it. 😯 Unanticipated (effortless) ‘side effect’, which was a pleasant surprise. ☺️ ]

NutritionFacts.org video 📹 ( nutritionfacts.org/video/wh... ) towards bottom of page ( healthunlocked.com/nras/pos... ) elaborates, if interested. 🤔

Wishing you the very best, Magymay. 😌 🙏 🍀 🌺 🌞

.

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Have you considered asking to be referred to Rheumatology connected Physio? They can help with starter exercises, they know how things are for us so adapt specific exercises you can do at home. I've had the benefit of them & found it really helpful. It's important to warm up & down & that the exercises are specifically for us with joint involvement so do see if your Rheumy will refer you, if it's him telling you you need to lose weight there's no reason I can think of that he wouldn't.

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I tried that. I was referred to RA physio who gave me a stretchy band and shown a few leg exercises, asked to walk up and down their toy staircase and told to go and buy an exercise DVD. Not the best experience ever and maybe unlucky.

J

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That's not great is it? Big difference from my experience. I was also given a resistance band (or your better description of a stretchy band!) but I also had manipulation, shown how to do my exercises & given a personalised plan from Physio, about 12 sheets I think & 3 sessions plus another 3 if I needed it which I've not taken up yet. I also have Rheumatology Occupational Therapy Physio for hand strengthening & median nerve exercises, 7 double sided sheets plus another 4 for median nerve. I had 4 reviews for that & it's open ended, I just need to call their direct line if I need to see them. I've also been given a perching stool, 2 wrist splints & a walking stick. Quite a difference in experience hey Jan? x

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Thank you for sharing. I feel really deprived now. I may have to revisit the whole referral process. Your experience was what I was expecting -Dad was a physio - and felt really let down.

J

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Aw I'm sorry Jan, that wasn't my intention I'm sure you know. I'd do some homework, ask around or explain how it wasn't what you were expecting or needing, maybe it was the wrong Physio? x

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I didn't for one moment think you had that intention and I'm sorry. It's me. Everything I say or do at the moment comes out wrong. Maladroit would be a kind word for it. Acid old trout would be nearer the mark.

It was his last day before retirement. On a Friday afternoon. Bad luck on my part perhaps but will do as you suggest as soon as we get back. Hugs

J

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You're all right, I have days like those, especially when under duress, like filling in the bleep bleep PIP renewal form grr.

Well that could explain it, disinterested possibly? Yes, do have another try, you may just have a better experience? Get back? Are you on your hols? If so I hope it's somewhere warm, we've had sleet, hail & it's now trying to snow but it won't stick, rarely does here. x

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Snap! Sleet, hail and quite determined snow blizzards so far. Not laying thank goodness as we're off to St Lucia tomorrow and need to drIve to Gatwick. I'm very glad it's not Heathrow as our last encounter was very stressful. I can't wait.

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Oh lovely, I don't think. I do hope it doesn't stick, experience tells an easy trip to the airport is a less stressful start, especially city airports. We used to only need to go down the road 10 mins then they shut the damn thing.

Do you have a weight limit? I'm only a little one! Enjoy it, lovely sunshine on your bones, can't beat it. x

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They should give you a full personalised programme and let you use their gym to do it. My Physio is a gem but I've known him 22 years and he knows my joints very well! Doesn't matter anyhow his long you've had it it known the Physio, you should be given more and referred to hydro and the OT so do ask. Good luck.

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It was, quite literally, Friday afternoon and doesn't it show?

J

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I'm with you. I'm starting (again!) to try and get myself feeling better. I'm going to give keto a go, mostly because you specially don't have to exercise. I feel like I barely have enough energy to just keep the very bare bone basics happening around here, let alone trying to exercise. I am going to look into swimming a few times a week.

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I saw the RA related physio and was a good girl and did my exercises. Then I joined a Pilates class.

I walk lots (my dog is the best medicine ever!), plus joined Slimming World.

I used to struggle to walk 300 metres, but today I am infinitely better.

It feels wrong but exercise and dieting definitely help fight the fatigue, also lifts the spirits! I was told it will hurt (it does - some days more than others) but it’s not doing any damage.

And if I can do it, anyone can!

Keep positive, you CAN do it xx

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Agree, it's tough to start but it does work. You can do beginners exercises from your sofa, no need to join a gym, and read on line about how to change your diet to loose weight.

For me the difficult bit was to convinced myself that my long term health was important enough to make the effort. One day at a time....

And make sure you take your folic acid, as that helps with fatigue too.

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Thank you for your replies .I do exercises that physio gave me but swimming is by far the easiest and it helps loosen my joints .I'm thinking of cutting out gluten and wheat to see if it makes a difference.Heard this helps has anyone tried this ?

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Hello Magymay ,

I have been trying to swim for fitness with Ra too.

I think you are doing well . I think it is a bit of a cop out to say that people with health problems like Ra are more prone to put on weight because they don't exercise.

I think it is a much to do with the possibility that common medications cause changes to our metabolisms and makes us more likely to gain weight?

I have not tried to go wheat or gluten free as it is a very expensive choice? And I worry that the gluten free options may be not as healthy as you might think ? in the same way as the maslow fat options may contain unhealthy levels of sugar and salt?

I try to eat smaller portions and am cutting down on meat and eating more homemade veg soups ..... I have been putting off weighing myself as i have started taking a muscle relaxant in the last 6 months and I can feel that my weight has changed since then . ( not just because of christmas )

I would love to hear how you get on going wheat and gluten free. Especially if you experience a reduction in ra symptoms and pain.

I believe in moderation in all things, even moderation? And a little bit of what you fancy once in a while does you good. So no food or treat should be barred forever?

Good luck with weight loss/healthy eating. xxx

Ps

Jumbo porridge oats and blueberries with stewed apples or bananas is my go to breakfast at the moment. And its yummy. Blueberries for memory and oats for healthy cholesterol levels is a lucky bonus.

But it is definitely not gluten free. There are so many variables in what is perceived as healthy these days. Especially when searching online.

Best wishes xx

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Bit more on oats 🌾 / porridge if you’re interested, spzgirl51: Oats as Cooked Oatmeal or Fermented Overnight. Rolled, Steel Cut, or Whole Groat. Prebiotic, Probiotic, not Idiotic via Dr. Richard Matthews: healthunlocked.com/cure-art... 😋 🍎 🍌 🥣

[Also, interesting explanation about why some oats are gluten-free & others are not (cross contamination from neighbouring gluten-containing crops, such as wheat). 😳 Fascinating stuff. 😯 Who’d think there’s so much to a simple oat 🌾 ?! 🤔 🤯 😃 ]

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🙏 🍀 🌺 🌞

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Gluten free can be a really bad choice in terms of carb-loading. And yeah - the gluten free flours can be pretty expensive, although there are a lot more on the market then when we were doing it 15 years ago. Good luck if you go that way..

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I ended up having bariatric surgery.xxx

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Hi. I'm not sure if this is reassuring or not but it is interesting at least. Latest research says that exercise does not help you to lose weight. It's all about diet. My gp has said that for years but it has now been proven. I find this very frustrating because I do exercise a bit but I eat too much junk so remain very overweight. Being ill makes it much harder to eat well I think and fatigue makes us really crave sugar and carbs. X

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Having RA does cause weight gain simply because we cant move like we used to. Over the years I have gone on so many diets that I am sure I have lost a whole person! I used to go to the pool which is very good for muscle tone but never experienced weight loss. Have just bought an exercise boke simply to improve my fitness.

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Hi Magymay, have you thought about swimming? I have severe RA + Lupus and the only exercise I can do is swim. Your body is supported by the water, start with a few lengths and build up gradually.

Good luck. x

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Hi everyone thanks for replies .The gluten free thing seems pretty expensive so I think it probably better to just balance what I eat into neat portions and plenty of veg and pulses .Love my porridge and natural fruit and nuts .Now that my MTX8is being raised my psoriasis should clear and swimming will be an option .The fatigue I think has a big part in the weight gain as I was always on the go ..hope you are all feeling well and staying positive 😄

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👍👍

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Don’t know if you’re already aware of PsA-er Nicole ( healthunlocked.com/cure-art...’sheas-journal-journey ), Magymay? One smart cookie 🍪 & you might value her experience with Psoriasis & Psoriatic Arthritis? 🤔 (Merely an additional resource to add to the pile 📚 if not already aware of. 🤪 🤣 ☺️ ) Wishing you the very best, Magymay. 🙏 🍀 🌺 🌞

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Thanks Kai I'll look her up 👍

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I'm pleased you've decided to rethink trying going gluten-free Magymay, for multiple reasons. Unless you've been diagnosed Coeliac why limit the foods which give nutrients we need for something that's inherently higher in preservatives & sugar? Unless you're able to & content with baking all your own bread, pastry, pasta, sauces etc &, if you want them, cakes, you're going to be paying over the top for gluten-free products.

You'd be at risk of yet further inflammation. We need complex carbs, all manner of beans, lentils & other pulses, wholegrains, sweet potato, sweetcorn, the list goes on, they're all more slowly absorbed. They're also good sources of Vitamin B (each B Vitamin is important in it's own right in RD, PsA etc) Vitamin C & potassium, which need need for good muscle function & helping to maintain good blood pressure & in turn cardiovascular health, again needed with our conditions. They're less likely to spike your blood sugar levels therefore fatigue should become less of an issue meaning you become less sedentary, plus you shouldn't get hunger pangs. Being less fatigued means more energy, which we could all do with more of right? They also help short term memory, many of us need help there, myself included!

You say you have gained weight. Many of us with RD, PsA etc need to ensure our weight is stable, it helps lessen stress on our already stressed joints. That takes us back to inflammation, you'd be at higher risk, like we're not high enough, of your metabolism slowing down, as well as physically slowing down, as you're experiencing with that comes weight gain.

I think your intention to eat a balanced 'diet' with the food groups you mention is a wise one. Once your skin clears swimming will be good, it's not only good exercise it's helpful for our joints... also walking in the water helps strengthen muscles necessary to support & protect our joints.

I hope you stay positive too, it goes a long way to coping with autoimmune diseases.

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Yes I think your right .My husband has taken on an allotment and I always grow my own veg at home.Just need to get him to do the heavy work now and make some raised beds for me .I think this last year I was so flared and just uninterested maybe that's the brain fog I hear people mentioning .When I'm really wiped out I feel weepy and don't really want company until it passes .A bit like depression or so I would imagine.Hoping when they up my meds in 2weeks it might be better .I'm lucky I have such a supportive family as I know some aren't so lucky.Anyway it's a blizzard outside so no planting veg for now but I'm looking forward to spring and feeling better .Hope your well 😊

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