I went for a day out yesterday to a town that i am thinking of moving to, and it has led to a flare of severe muscle pain throughout my arms, legs, feet and hands - what could this be??
I've been diagnosed with UCTD and also possible fibromyalgia in addition to that. I'm on hydroxy and pregabalin. Usually I am well enough to go to work and that's it, and I spend my weekends resting. I've been feeling pretty good though so I thought I'd attempt this trip. I got the train there and me and my friend spent prob two hrs walking around the marketplace before getting the train back. I felt great all day, until on the train I started to feel pain. By the time I got home I felt like I'd been hit by a truck, and felt the same all day today. Severe muscle pain throughout my limbs, hurts to move my arms and legs etc and everything is throbbing like mad.
Is this likely to be a) a new symptom of the UCTD e.g. some kind of myositis? or b) fibromyalgia? Or c) usual UCTD and I just overdid it? I'm seeing my rheumatologist in a week but wanted to ask your opinions and if anyone else gets this?
Thanks in advance
Lucy
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LuckyJC
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Hi Lucy, sorry to read this happened. I am in pain most of the time, some of it is joint pain and often headache but most of the pain is muscular. I have myosotis as a symptom of Lupus. If I do anything which means I'm tensing my muscles the reaction is severe and diffuse pain.
Simply chatting with friends or family will set this off for me. Definitely walking any distance particularly if I'm feeling tense will result in hours of pain.
There is a specific blood test to diagnose myosotis as distinct from myalgia, it's CPK ( creatine phosphokinese ) which measures enzyme levels.
I'd mention this particular pain you've suffered, to your rheumatologist next week.
It's a very typical reaction to doing more than usual for my autoimmune disorder, polymyalgia rheumatica (PMR). Many doctors confuse it and fibromyalgia - the primary difference is that PMR responds to a moderate dose of corticosteroids which relieves the inflammation and so the pain and stiffness. However, the autoimmune disorder carries on in the background and makes your muscles intolerant of acute exercise. The muscles are unable to signal you are doing too much and then you develop delayed onset muscle soreness which takes much longer than usual to go away.
As P-M says, in myositis the blood test CPK is raised because of the breakdown of muscle fibres, in PMR the ESR and CRP are raised as inflammatory markers in 80% of patients, CPK is NOT raised. In fibro, none of them are raised. Both myositis and PMR respond to corticosteroids.
And I would mention it to your rheumy when you see him.
Interesting. My husband just bought the totsl gym. And i thought, great, let me exercise too. I have always been active my entire life. Well....I woke up today like a truck hit me during the night. I didnt get out of bed till late morning. Pretty awful. I am upset, but refuse to give up. I didnt overdo it either. Only one set, low angle. Maybe 1/2 hr. I wont give up. I cant give up being active. This is very distressing to me.
It is an autoimmune vasculitis that is felt to restrict blood flow to the muscles because of the inflammation in the vessel walls. Pred just reduces that inflammation which improves the pain and stiffness. But the autoimmune process continues in the background, possibly also attacking the muscles and other structures themselves making the muscle intolerant of acute exercise.
Sorry - half an hour for a starting session when you have an autoimmune disorder of any sort is asking for trouble. Five minutes on the first day and see how you are is the way to go. Then add maybe a couple of minutes each session but have sessions on alternate days, having a rest day in between, until you find the amount that is too much. Then cut back to the level that was OK for a while before trying to add a bit more. The very slow building up of "training" allows your muscles to recover. At some point you will be able to do a fairly normal session. But you can't get there overnight.
Pushing and forcing yourself to do things will just leave you feeling as you did yesterday almost permanently. You have a new normal now and you have to learn your new limits. It is called pacing and is essential to allow an even status - not good days when you overdo it alternating with awful days where you suffer payback. It is even possible to do permanent damage by forcing yourself to overdo it - leaving you in the state you were yesterday every day and unable even to walk short distances.
It sounds boring, you may feel that you are giving in, getting old - but moderation is essential. Sensible diet, not fad "detoxes" that can and do result in people ending up in hospital seriously ill due to high or low potassium/calcium/sodium levels (several cases have been reported recently in "detox January") and gentle exercise to start with, possibly for longer, maybe even permanently, will let you live an otherwise fairly normal life. Which is what you want isn't it?
Yes. Thank you PMRpro. I actually did start out with 6-8 min routine for a week before I upped it. I got excited. Lol. I guess I should continue just the 6-8 min routine for a month or so. Just listen to your body, right? I didn't work out one day. So, I am going to try and do some today.
I know detoxing doesn't work for me. I have tried before, and I had problems and had to stop. I am doing enzyme therapy though. Which is basically enzymes to help my digestion that doesn't work well at all. With minerals and anti inflammatory herbs. Sometimes, I don't react well to this. But, I cut back and use maybe once or twice a week.
My shoulders are still killing me, but I thought stretching the muscle out would be good. My sodium levels are high, and I drink ginger/turmeric tea daily for magnesium and potassium. I am having some trouble with anemia from time to time.
Yes. I noticed that. I don't have the same muscle pain after a workout I had when I was younger. It hits me the next day with fibro pain in shoulders, joints, etc. So strange.
Called DOMS, delayed onset muscle soreness. Except it lasts longer for us for whatever reason. I'll leave you to google it but basically our muscles are unable to repair the microtrauma caused by certain sorts of exercise as they normally would. The other difference for us is that more exercise doesn't help - it can just make it even worse.
Am really interested in this idea because it makes complete sense. The way I felt after walking around the town on Saturday was the way I used to feel when I'd overdone it at the gym - except about a million times more severe!
Exactly! You can get there, I did when skiing But it took me 3 months to get to the level I had previously got to in perhaps 3 weeks. At first I couldn't ski each day and had to start with 3 very short runs - but built it up slowly until by mid-February I felt able to do one long run rather than 3 short ones. Before that the rest on the lift was an essential part of the morning skiing!
Yes - but don't do low level for weeks and then suddenly increase. The same thing will happen. Increase slowly but steadily and if you have problems mark time for a week or so. Then try again. Listen to your body.
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Pain day today 
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