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I still don't know what's happening to me

Hey all

What a confusing and unpredictable condition this is! I'm over 5 years since diagnosis and I still don't know for sure when I'm relapsing or whether my problems are a result of the major relapse I had when I was first diagnosed in 2012. I put it down to good days and bad days, and the general aches and pains of living with RRMS. 

However, it's just occurred to me that I've probably had a significant relapse in the last month. Just measured against what I feel like now. I think it's been building up for a while, the problem being major fatigue and some difficulty walking, plus pain in my back, although I do have arthritis too. So I'm never sure which it is.

A few weeks ago I was logged on working from home. I had 8 full hours sleep the night before, but by 10am I had to email my team to say that I had to log off and go to bed, I could hardly keep my eyes open to type the email. I slept pretty much for the next 2 days solidly, didn't leave the house, eat, or wash for 4 days (gross I know). I felt like my body just shut down. Very hard explaining this to work, but they try to be understanding. I also felt incredibly depressed. Like I didn't want to be here anymore. Don't get me wrong, I would never hurt myself but I haven't felt so low and anxious since my brother died. I called the employee assistance line through work at midnight one night to speak to a counsellor and that helped.

I feel 100% better in every way and I'm back at work. I felt tired last week, but normal tiredness, and not even comparable to what the previous few weeks were like.

Does anyone else struggle with understanding what is happening to them and when a relapse is truly a relapse?

Thanks all xxx

My question is, what is your lifestyle? May I suggest, try to enrol for yoga class.It can help ease what you've feeling especially depression.

My lifestyle is basically leaving home for work at 7.20am, working from 9 until 6 in central London, and getting home at 7.30/8pm. It's not easy. I'm having Physio and doing the exercises every night. I'm told that the damage on my spine is partly due to my flexibility. I'm double jointed and did a lot of gymnastics when I was young. I have also had a fair few falls from horses in my time, although I haven't ridden for a long time.

MS and Arthritis is a double whammy for me and I'd be interested to hear from others in the same position. I'm pretty sure I've had a relapse now as, although I'm tired, I don't feel as awful as I did a few weeks ago.

Oh dear i read your life style Lou, and not being funny but even a well person would find that hard work and exhausting. Its not just working its the travel and getting home and i am sure you have things to do when you get there. anyone healthy would be tired with that schedule.

do you take meds for the pain?

I wonder if you had a virus there are lots of things going around at the moment we always put it down to our MS, but you could have picked up a virus non specific and it hit you. BLAM, then it burns itself out.

I think relapses are more specific. I agree with the other poster you need to do a health diary and also you must rest as much as you can in between working.

So what are your main issues with your MS? Usually with an exacerbation those symptoms will suddenly get worse for over 24 to 30 hours to start with, so if its numbness in one side and it suddenly gets worse for a few days and wont go you can almost guarantee its a start of perhaps a relapse.

Once the relapse finally burns itself out you usually find it will leave that one thing worse off.

that is how i understand it. I dont have RRMS i have PPMS so my disease is more or less the same but slowly is getting worse.

If you recovered so quickly from this massive tiredness i wonder if you had been hit by a virus.

Write down what you believe to be the MS symptoms and the the ones for arthritis. I would think the arthritis is more stiffening and pain in one joint.

I wonder if you have RA, because the time you felt so tired and achey and you slept sounds like a flare of that. My friend has RA and will suddenly just have to sleep and feels like she has the flu.

as inflammation is rife in your body have you thought about your diet. I know for a fact that gluten free diets, and even paleo diets help people with RA and arthritis as well as MS. My same friend is on a paleo and gluten free diet now, and has not only lost weight she has way more energy.

Have you not got an MS nurse? You seem to be trying to strugle with this on your own.

I do think though your work schedule is manic and even without the issues you would be tired.

My gut feeling i think you had a virus and your body just said right your resting and wham you did.

I do think you need to do a diary, and work out what your symptoms of MS are and if any of them get worse after an attack etc.

I feel for you wow you are very hard working, and I admire anyone who keeps going with one illness never mind two. sending you massive hugs. xxxxxxxxxxxxxxxxxxxxxx remember when you can have a duvet day and do nothing just buy popcorn and watch some films on telly. xxxx

I have MS

Hi Lou

Its a bugger when you can't isolate a relapse from ongoing problems. I think many of us who are, or who have been RR can empathise with you there. But really there's no way of determining what is or is not a relapse. Possibly the only thing you can do is to start keeping a health diary, even if all you do is once per week, list all the various parts of your body, including fatigue, cognition, bowels and bladder, stiffness, pain, mood. Include anything related to arthritis too (are there any suitable drugs to help?)

With regard to fatigue, there's an MS Trust factsheet (as there is on so many things MSy) see https://www.mstrust.org.uk/a-z/fatigue

You could also try a drug for fatigue, i.e. Amantadine (or Modafinil if you can get it, but that's quite hard). 

Meanwhile, it does sound like it's a relapse. You should make sure your MS nurse, assuming you have one, knows it's probably been a relapse. It's always a good idea to have relapses logged by someone medical.

Are you on a DMD? If not, perhaps you could try and get on one to prevent relapses. 

Sorry, it seems like I'm a pharmaceutical rep, suggesting drugs for this, that and the other. 

Sue

Thank you so much Sue, this is all really helpful xx

Hi Lou, trouble is you have 2 autoimmune diseases that are playing havoc with your system. My consultant told me both cause fatigue & can resemble symptoms of each other at times, hard to know what's doing what!!! I have another nice 1 called Scleroderma, that's a princess that 1, so all in all you are entitled to feel s*** at times, hard coping with 1 of them, let alone any others. All I can say is listen to your body, don't push it, it'll make things worse, take care Tracey x

Thank you so much for your support Tracey. I've also got vitiligo which is another auto-immune disease. I wonder if any of this is linked to the fact that I never had any of the childhood diseases, chicken pox, mumps etc even being in very close contact with my friends and brother who did. Would be interesting to hear other people's thoughts and whether there has been any research on this xx

What type of Arthritis do you have? Mine is Psoriasis Arthritis.

Hi, still to find out. The spinal surgeon I saw was very vague and I wasn't impressed so moved to another. My phsysio hadn't seen my MRI when I saw him for the first time. Next time I'm seeing him is on Tuesday so I will ask for clarification xx

That is interesting Bretagne. As well as RRMS I also have arthritis which I think is linked to psoriasis although my specialist says it is not.  However when my psoriasis flares up my back pain stiffness also increases dramatically.

Regards

I have MS

Hi Loublou, well your description & subsequent relaxing of the symptoms seem to point to a relapse. Mention it to your MS nurse & Neuro if poss. The next MRI will show evidence of whether a relapse or a lot of symptoms together make it rough for you.  None of us are the same, but I've learned, in the great scheme of things, our body let's us know when to rest sleep etc, merely by not functioning.

MS is a devil monster & we generally just have to accept the bad days & rejoice the better days.  Feel good breaks via DMD's are available for RRMS, to lengthen remissions & lessen relapses.  Good luck hon x

Thank you so much Chrissie. I hope you are well xx

Hi Loublou

 

Like yourself I have been diagnosed about 2 years back with RRMS and with arthritis of the spine.  I am also still working a 5 day week, 2-3 days of which I spend travelling almost 4 hours to and from my office.

On a good day the travel is just about manageable.  On a bad day I am plagued with stiffness in the lower back and pins and needles from the knees downwards; at almost intolerable levels.  As for medication, I am taking 6-8 x 300mg of Gabapentin per day and am also on the DMT Tecfidera which hopefully will slow the progress of the MS.

You are not sure whether or not you are having relapses?  A contrasting MRI should show if you have any increased scarring and brain plaques since your last one and is used to gauge the extent of ongoing relapses. I have had such an MRI about 2 weeks back and am awaiting to see my MS consultant whom will read them and acscertain if I have been having any more relapses and if the Tecfidera is doing its job.

Hope this info has been of help.

 

Regards