Hi I was just looking for some help. My mum has ms and is now in a wheelchair. Our family don’t talk about things like that so I have only known for 10 years or so. I’m not sure how it started with her or for how long she’s actually had it. I’m nearly 40 and have been pretty sporty all my life - a couple of weeks ago I was out doing a training run for a challenge coming up and I hurt my knee. For some reason I was compelled to look at symptoms of ms and since then I have had pain in nearly every bone/joint in my body. The pain was so bad over the weekend I actually went to the doctors on Monday who said I was silly to think it was ms as pain isn’t an early symptom and has told me I have tennis elbow in both arms and that my knee just needs rest. I know I should listen to the doctor however my mind just can’t accept what she said - my legs ache constantly to varying degrees and so do my arms. I know that my mum experiences numbness and I don’t really have that just the ache. Am I being completely stupid? I don’t mind people telling me that I am and to get a life - I wish I could speak to her but I can’t and I don’t want to speak to my husband as I don’t want him to worry etc.
The fact the vast majority of these pains have come on only since you started looking up symptoms suggests there probably is a psychological element. If it had been the other way round, and you’d said you’d had these pains a long time, but looking them up was the lightbulb moment, I might think you were onto something. But even you appear to acknowledge the timing was suspicious: start reading a little too much, but only THEN get the pains!
I would really encourage you to speak to your mum or your husband, as I don’t think keeping secrets about things that worry you is a very healthy way of dealing with them. Why couldn’t you speak to your mum? If she’s had it at least ten years, and possibly longer than that, before you knew, it seems unlikely it would be a shocking or taboo subject by now - it must be part of who she is. Obviously, you don’t have to blurt out: “Mum, I think I’ve got MS!”, but you could ask her about things like when it started, and how she first became aware something was wrong.
In familes where several members have MS, broadly speaking, age of onset tends to be similar. So if your mum started young (say in her 20s), it’s much less likely you’d be starting with the same thing around 40. How affected relatives got on is not otherwise predictive of disease course, by the way, so even in the (unlikely) event you did have MS, your mum ending up in a wheelchair would not mean fate holds the same for you. Outcomes vary widely, even within the same family.
Joint pain isn’t typically associated with MS. Having said that, I’ve always had it, but my neurologist is dismissive, and claims it isn’t related to the MS. So I don’t know what message you should take from that. It’s just possible I have some unrelated condition that’s yet to be diagnosed, and my consultant really is right it’s nothing to do with MS!
Nerve pain - which can include things like tingling, pins & needles, burning, buzzing, crawling and electrical sensations - is much more commonly reported, along with numbness, which you already know about.
I don’t think it’s necessarily true that pain is not an early symptom. Some people have pain from the start; a few lucky people have never had it! Until fairly recently, it was not widely accepted that MS caused pain at all, so I think perhaps your doctor has quite an archaic view, thinking that pain would not be an issue if it was MS. Nevertheless, the kind of pain you’re reporting does NOT sound typical, and could be just injuries consistent with a fortyish person doing a lot of sport!
Hi Tina Thanks for your reply. I didnt want to ask what potentialy could be deemed as a really silly ans insensitive question. No the way my mum deals with it is that you don’t mention it! I have friends of friends that have it so I should maybe ask them. The muscle pain ranges from being sore to something that I call spongy - not exactly numbness. It’s the first time I have experienced this and so I think I just have to see what happens and go from there. How are you at the moment? Thanks again P
Hello Pam and welcome I think the crucial thing in what you wrote is that you hurt your knee first. To me, that means that it is not MS. I think it’s probably very likely that your brain is making up the other pain because of your reading, but if the pain is very bad, you should try your GP again because there is a neurological condition called CRPS that often starts with an injury. I think there may be other related things too. Being super aware of our bodies allows our brain to focus on minor aches and pains and sensory things that we otherwise wouldn’t have noticed or would just have shrugged off. In the brain, cells that aren’t being actively used still give off a small amount of electrical activity. If they are called on to work, the level of activity gets stronger. Depending on what kind of cell it is, we can become conscious of the thing the cell is working on after the activity passes some particular level. If it doesn’t pass that threshold, we remain unaware of the activity. Attention is important because it increases signal wherever it is applied. So if there is a cell with an activity level below the threshold, paying attention to the thing it does could make the activity go over the threshold - and we become aware of whatever it was doing. Which of course would make us even more aware and alert to similar things! I’m telling you this in the hope that it will put your mind to rest - there is a potential physiological explanation for your pain. However, don’t be afraid to see your GP again if you are worried - it’s unlikely to be MS, but there’s a chance it could be more than your brain playing tricks on you. Karen x