I've just come back from GP about my arse ache from the other night. He thinks it could be lower back problems perhaps pressing on nerves causing spasms, this is probably connected to UIA.
However, he examined my legs too - and I thought I was beginning to imagine it - but he said I have very little muscle in my thighs ! He started talking about muscle wastage! As well as the slight weight loss I have been asking my husband for several weeks if he could see that my hips and thighs look weird (😁), he couldn't see it.
I'm so surprised - shocked. I have done some research and on NRAS website it says it can be one of the earlier symptoms even after just a few months and often signals a poor outcome. Ffs.
I already walk about a thousand miles a week, do my squats and strength exercises. What else can I possibly do? I've done so much research, made sure that I'm not exercising the weight off, stuck to my routine, not overdone it. He suggested I should add a protein supplement - I already have a really good balanced diet with plenty of protein...
BTW - I did take my mtx today
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Brychni
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Oh no🤦♀️ Oh that’s a shame Brychni! I just can’t believe how crappy this illness is 😭 Maybe your back problems are contributing to it as nerves kind of keep the muscles “ awake” I hope that when you get that sorted your muscles will come back . Maybe some physio or tens stimulation on your thighs would help? Xx
Wouldn't bother with a Tens machine. All they do is give you different sensations. They don't do buggerall for pain . But then we are all different, so perhaps it might work you. But I doubt it.👎
I know what you mean, because most days I feel the same. I literally want to hurt myself. When you have the same bloody pain day after day. It gets me so down that very often, I can be walking through the kitchen and I'll kick the chair or anything that I'm near, because if I hurt my foot or whatever, it's a different kind of pain. But try explaining that to somebody that doesn't have pain. They just wouldn't understand. 😊
My physio said to me i will have lost some muscle mass as when you are in pain you don't move in the same way and hence loose muscle. I'm chunky so think that muscle has been replaced with lard but if you're smaller it will probably show more.
Sometimes its best not to look things up,plus your GP isn't a specialist so if you showed this to your consultant they probably wouldn't think twice about it.
I've noticed that my thighs look like I'm losing muscle but assumed that it was because I was being lazy and not exercising enough 🤔 I've lost the incentive since stopping going to pool for swimming and AquaFit 🏊😢
I first noticed a problem with weakness in the summer swimming in the river. My husband had to drag me out over the rocks because I couldn't lift myself out. But I really though that lifting some light weights a few times a week would solve the problem but apparently it's quite difficult to get it back. I've noticed it in my shoulders too. I'm surprised by how quickly it has happened.
Not as much as I should! I have started walking more with hubby and the dog recently though. The good news is that I'm finding it much easier than earlier in the summer (hubby has found that he's not having to slow down for me as much as he was) and I'm sure that's because my meds are starting to work and I've got more energy 😊
This thread made me feel guilty earlier so I rode my exercise bike for a while 🤣🚲😁
I agree about the meds. HDX appears not to do much but I do think it has helped with fatigue and energy levels. When I was first diagnosed I was always asked about fatigue and couldn't really say that I had experienced it (except after doing something new - decorating) and then it started. I had a few times out walking when I thought I couldn't make it home, then a few days when I really didn't want to get out of bed or off the sofa. It was short lived and I reckon it's the hydx that's nipped it in the bud.
Might be worth asking for referral to dietician because getting more protein in your diet might help.... I’m no expert but that was my instinctive thought
There was an interesting article in The Times recently about muscle wasting/loss of people following intermittent fasting diets like 5:2 and 16:8. I don't know whether that applies to you but it's worth a read anyway.
Hi Brychni, I have Chronic Fibromyalgia as well as a lot of other health issues.
Up until 9 years ago there was no stopping me.I was pretty much as fit as a fiddle. Then the one year, just before Christmas, I was in Cwmbran with my Daughter in Law. But I was so exhausted all of a sudden,my Daughter in Law had to drive me home. I was okay after a couple of days. So I decided to start making the mince pies etc for Christmas.
I started to roll the pastry out and then,
NOTHING. I ended up in hospital for 6 weeks. The Neurologist told me that I had Chronic Fibromyalgia. I had never even heard of it before. I have been immobile for such a long time, lost so much muscle and so much weight. My legs are so weak and painful. Try to keep your Legs moving as much as you can.
My Rheumatologist told me that the day I stop using my Legs, is the day that I'll go downhill fast. Have seen the Hospital Dietician and now I have Yoghurts and Calogen shots delivered every week on repeat prescription .My weight have gone up from 6 st to 7st 5 oz.
But my muscles are still very weak. When you are in so much pain you can't move so much. But when you lose your muscles, you have a real problem getting them back, if ever. 🏋️♀️🏋️♀️🏋️♀️.
Can I jump in on conversation,what are calogen shots?I have severe muscle wastage and very under weight..have Amyes prescription drinks on repeat,my diet is very poor,don.t want to eat...onBenepali injections bloods okay ...that's all my medics go by.covid hasn't helped..no face to face
Hi Ruby _sommer,, I know what it's like when you don't want to eat. Sometimes I have to close my eyes, before I can put any food in my mouth. The Calogen shots are only tiny little drinks, about as big as an egg cup. One mouthful and it's gone,but they are full of Vitamins, protein and everything your body needs to keep you going. They have 250 calories in one shot. If you have severe muscle wastage and you're underweight, those shots are just the thing to help you. I used to drink 3 or 4 a day, but now I am down to 2 a day. Don't expect miracles, but in time, they really will help you. Have you been referred to a dietician, it's not only big people that have to go to those Clinics. No Face to Face is Crap. But give your GPa ring and ask about them. Hope this helps you. 🤞👍🤗. Good Luck and Take Care..
yes, it's the bit about not being able to get it back that concerns me, I already do a lot to help myself stay strong. Are you able to do any physio KB? What have rheumatology said about your muscles long term? x
Hi Brychni, My Rheumatologist have tried me on everything that he can think of, but nothing seems to work for me. Can't do any Physio ,because I'm so weak. I've got Valvula Heart Disease, COPD, Angina and Asthma. So get out of breath very quick. Try to keep doing the exercises, they will help🏋️♀️👍. Even if you can't see it. When I 1 first started to lose weight, I was so pleased with myself .I used to do exercises every day,Keep Fit., Healthy eating etc. Then one day my Hubby said to me, " Glo something's not right, you're losing too much weight. ".He was right. My dress size dropped from a size 12 to a size 6 in less than 6 months. I looked like a Scrawny pigeon. In fact that's what my Cardiologist called me ( A Scrawny Pigeon). Cheeky Sod. Hahaha .But although I'm now a dress size 10 ,my muscles are very weak,making it really painful when I try to walk. So my muscles long term are 👎👎👎 Keep doing your exercisers 👍🏋️♀️🤾♀️🚶♀️. Take Care of yourself. 🤗
Don’t start looking it up on Dr Google....you’ll frighten yourself silly. My sister has myosotis and every time I feel a bit weak and feeble (like 90% of the time at the mo) I convince myself I've got it too.
There are other nasties too. But the best thing to do for just about all of them is the straightforward eat well and keep exercising. There’s basically bugger all else.
But my other sister had a spinal op that we t a bit wrong and kept her lying flat on her back for 3 months. She was like a bit of overcooked spaghetti. Slowly but surely she has eaten and exercised herself back to a pretty good level of fitness. So there is hope, just no magic cure.
I think I need to step up the resistance band and weights and squats. at the moment I do them about 3/4 times a week.
I walk the dog every day and a lot of it is up hill. Then I run every other day in addition to the walk. I'm not fast enough for it to be the cause of weight loss. I really plod! Listening to my podcasts.
probably! I'm certain that there is hormonal activity too. I've heard that women often lose a lot of 'condition' (weight) when going through menopause.
Running has been proven to have the greatest effect on symptoms of perimenopause so even though I'm 49 and have noticed changes in my cycle, I have no other symptoms/clues but perhaps weight and muscle loss is one of them.
I’ve lost a lot of muscle in the last 12 months, but also really struggled to build it in the first place having lost a tonne of weight and wanting to try and feel better about my saggy-skinned dad bod: it was a real double whammy to start losing it in my case. Alongside monitoring my weight and diet, I also track inches as a result of my prior size and shape (it’s motivating if the numbers on the scale are no longer going down but the tape measure is reflecting change whichever way you want it) and I’ve dropped at least an inch or two, in some cases nearer 3, from pretty much every area where I was actually aiming for more prior to this last flare. All the areas that I’d managed to build working my butt off 4 or 5 days a week and inhaling practically a whole chicken a day (unknowingly required to compensate for the undiagnosed IA), has very quickly disappeared. My cardio fitness is back to being pretty good (I can do 8km on the bike in sub 15 minutes on a very good day), but my ability to build and maintain muscle is pretty much shot, and I do really struggle with weight work where last summer I was hauling 10kg dumbbells about with no issue and could happily pull 50kg on the machines in the gym. I’ve found modified body weight exercises like push ups (the way girls were always told to do them when I was in school, on your knees rather than up on the balls of your feet) and resistance bands are just about manageable subject to fatigue levels, and much better for my very dodgy mitts over trying to grip a bar. The other upshot of resistance bands is more bang for your buck as you have to work the muscles through all phases of an exercise, not just one phase as tends to be the case with weight work, so even at a lower equivalent resistance and lower reps, you can see benefit. These days, I’m literally concentrating on not losing, rather than gaining.
I know you say you’re getting plenty of protein in your diet, but how much is plenty, exactly?
Hi CG - I too seem to be have better lung capacity when running, fairly regularly I would go for a run and it would be really uncomfortable, like I had no puff and then the next day it would be back to normal again. That hasn't happened for along time and I actually have started to enjoy running rather than it being something I have to force myself to do. Pains in knees, back and feet generally, have got worse over the year and sometimes it's excruciating but somehow I manage to carry on. Early on in lockdown I had a few episodes when out walking when I just ran out of steam and felt like I couldn't carry on, but that has passed.
Thanks for the tip about resistance bands - I did used to have some that I used to great effect when my shoulder was bad, years before diagnosis. I'm going to dig them out again.
As for protein, I eat black rye bread for breakfast usually with an egg. Salad with mackerel for lunch if I remember. I also really like oat crackers, especially the cheese ones from Nairn's although sometimes if I eat one I end up eating 10 - which is obscene!
I snack on NUTS! I loooove them. It's a standing joke but I eat them by the truck load. Cahews, pistacchios, peanuts.... In the evening it's typically meat and 2 veg and I don't really deviate from that. I have the occasional square of 70% or 85% dark chocolate and I also drink quite a lot of coffee. When I'm in migraine mode I can't touch the stuff.
After years on modified ketogenic diet (loads of fat and protein) for migraines , it just stopped working really and in the past 6 months to a year I have been slowly giving up and adding more carbs. Have started to eat the occasional good quality, seeded wholemeal bread and even croissants (irresistible!).
Have you been given any advice from rheumatology/GP about the weight loss?x
So, with protein for muscle building, the recommendations are generally that you want to be eating about a gram of protein per pound of body weight: for me, that means about 150g a day, and without supplementing, I find that really difficult to achieve. If I can get to 100g a day from my diet I’m doing well, but I am a fairly fussy eater, and there are only so many chicken breasts I can tolerate in a day. If I have tuna at lunch, and chicken at tea, a 30g portion of cheese as a snack, plus the other little bits and bobs found in carb based foods, I might be up to 90g ish. I do quite fastidiously log what I eat on a daily basis, using an app that tracks macros as well as calories - I’ve mentioned before on here that I was morbidly obese and shed over 10 stone in recent years via diet and exercise. Carbs were my biggest issue: you probably already know this, but it’s proven the more carbs you eat, the more carbs you want, particularly with the starchy ones. My problems aside from portion control mostly stemmed from a love of bread, potatoes, and cheese. I would punch someone for a french baguette with a hunk of cheddar and probably have little regret when caught 🤷♂️😂 I do still eat bread, but strictly ration myself and fork out for seeded, higher protein options like Burgen Linseed and Soya which is available from a couple of supermarkets, or Livlife low carb (very hard to get your hands on outside of some Waitrose stores).
My dietary and weight issues are slightly complicated by other health problems: even to maintain my weight, I have to restrict my intake to about 1600 cals a day max when by rights I should be able to maintain on roughly 2200 given my size and activity levels. I gained the weight via being immobile for a couple of years awaiting surgery, and in the process of trying to lose it (again🤦♂️) post a second bout needing a further op, it finally came out about 3 years ago that I have a metabolic disorder requiring medication, which explained why I’ve always gained weight incredibly quickly if I can’t exercise - whilst I don’t want to lose any more muscle, I also don’t actually want to gain any more weight by increasing my intake, if that makes sense? The advice has been very limited tbh - keep exercising as much as possible whilst following a healthy, very high protein diet in the hopes that it may start to build back up again once the arthritis is (hopefully) fully under control 🤷♂️ I’m not holding my breath that I will be able to start bulking up again, but all I can do is keep trying.
I had problems with my butt I couldn’t sit properly for months , it felt like someone had kicked my tailbone bought a cushion off amazon , it relieved it to a certain extend but I think it’s a case of it goes on it’s own , I still get it a bit if I’ve been sitting about more than usual but then I use a hot water bottle and it helps
Years ago I bought 3 of those neck pillows for flying, selflessly one each for the children and one for my husband. I went without as I reasoned we wouldn't all be sleeping at the same time and we were trying to save money. Not one of them used the things so now they live permanently on the dinner table chairs where I have recently embraced them for exactly the same purpose!
No idea about muscle wastage but I’ve been crippled at times with back and bum pain and it’s horrible, horrible, horrible. Get to the root cause of the pain first. If your doc can’t diagnose you, try physio. Not cheap though.
Good back exercises on YouTube. NHS BACK STRETCHES. Physio guy.
Read up on piriformous syndrome if pain really deep in buttock. Gives spasms. Enough to make you yelp. It’s rare though. Muscular. Good luck. I feel for you.
Hi Brychni. Just been reading your post about bum pain and your general weight loss. You obviously do a lot to try and keep as fit as you can. It seems like forever that I've not been able to pick up speed let alone run.,😆. However, have you ever had a bone density scan? I have the same kind of coccyx pain especially when I've been sitting for more than 15 minutes. Had it for quite some time but I have osteoporosis as well as RA. I also have muscle wastage in my thighs. The doctor I see who monitors the osteoporosis (although not for 12 months now) said that the two quite often go together when I mentioned the bum ache and muscle wastage. I'm not saying that this is the case for you but it might be worth mentioning. I am very slight. Thin arms and legs and very little muscle. I was referred to a physio for the lower back pain and the exercises help a bit but not much.
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well whent to the docs what a wast of time
Hydroxy chloroquine and Muscles? Scared and Depressed.
What a waste of a day 
Another wasted injection - darn it!
