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Ms not very active but fatigue and pain worse

Hi everyone,

just wondered if anyone had similar experience?

ive had ms for many years but it is relatively quiet except for ongoing fatigue , muscle aches and stiffness and anxiety problems which have got really bad this last year or so. I asked my ms nurse to arrange for me to see neuro which she did, I saw a registrar who didn’t know me but he was very thorough and sent me for an MRI , said he thought I had chronic fatigue (me). After the MRI showing very little change or activity I then went to se my regular neuro with the results. He thinks I have fibromyalgia and has referred me across to a rheumatologist . Although I’m very relieved my ms does not appear to be progressing , I’m a bit lost as to whether I’ve got one or other or both of the new suggestions . Can you have these with the ms , can they be part of it or are they treat as separate? Or could it just be a very long relapse despite MRI results.

Appreciate any comments, thanks for reading.

I have no idea how active my MS is because it’s 17 years since my last MRI and I haven’t had a relapse since 2016. I can relate to the issues of pain and increasing fatigue. For the past few weeks I’ve had trouble with aching arms and shoulders. The problem seems to be muscular, but I haven’t done anything to cause it.

As for whether it’s possible to have ME and/or fibromyalgia at the same time as MS, the answer is probably yes. They aren’t part of the same condition and would be treated separately. I had a look at the symptoms of fibromyalgia. Unfortunately some of them are very similar to symptoms of the menopause which I’m dealing with at the moment, so a doctor would probably put my problems down to that rather than referring me to a specialist.

Hiya, I also read up about fibromyalgia and it does sound very similar to my MS (my diagnosis given after lumbar puncture tho). Wondering what medication folk diagnosed with fibromyalgia are prescribed and would it work better than gabapentin. Is anyone bf with Lady Gaga who has had to cancel concerts due to fibromyalgia?

Thanks for replying, I’ve asked neuro why cons thinks I’ve now got fibromyalgia and it’s because I’ve also got IBS and jaw pain as well as the chronic increase in muscle pain. Like you I haven’t done anything to cause it and my MRI shows its not likely to be a relapse.

Apparently people with fibromyalgia are prescribed pregabalin, which I take but only in small doses, I’m hoping I don’t have to in tease it greatly because I’m really scared to put on any more weight with it. I’ve been struggling to lose it this last 12 months I’ve been trying but only managed 10 lbs so far. Thanks for your comments

Hi

I had a possible diagnosis of ms a few years back, then after a second mri was told

i do not have active ms. As I was still suffering some pain and various other symptoms i

was also referred to a rheumatologist. I was told That my symptoms were consistent with fibromyalgia and to

check it out online. I guess that I was diagnosed with it! It kind of made me feel more depressed and therefore seemed to suffer more pain. The pain was real at times my thigh would feel as if it was about to give birth then it would go away after a few hours as if nothing had ever been wrong. These sort of pains would happen when i got tired or if I’d overdone things. Since that time I now try to eat more healthily and get more excersice and my symptoms seem to have lessoned although haven’t gone away completely. I’ve never taken any medication for this as it seems most of the pain i get does go away eventually. I also get pains in stomach after eating as if Food is giving me pain , under rib pain and face ache just to mention a few I hope you manage to find things out and get some help

leyla

I recently read a research article about ms and fibromyalgia which concluded that yes you can have MS and fibromyalgia together.

I saw that too, Anonymous.

I was dxd with fibromyalgia in autumn 2007 by a highly- thought of rheumatologist/general physician.DIdn’t know what it was back then and it was before all the info you can get online was available. I had a couple of bad months - aching all over and unbelievable exhaustion - and then it just sort of went away until my trip to MS dx started in October 2014.

My first neuro reckoned that it was the beginning of MS then. I’m still baffled by it but in a way I was glad not to know back then. Two young children, very little treatment, and a sister-in-law who had PPMS and eventually sadly passed away.

Louise

I came here after searching " fatigue " because at the moment I am having my worst ever fatigue. Literally drinking a glass of juice leaves me shaking. Doing my ISC is almost impossible…I have cut back from 5 times a day to just twice as the effort makes me feel so ill. I have tried to eat healthily but honestly eating is really difficult as is anything they.

My GP is not giving me any meds to try as I already have 16 meds for various medical problems.

I have fibromyalgia dx years ago by Rheumatology and MS plus a few other things which sadly need daily meditation to stay alive.

Fatigue is however killing me, I have no life and just cannot cope much longer.

I have Gabapentin and Amitriptyline as two of my meds, feel like quitting all meds to see which if any are causing this total wipe out of energy.

I long for night so I don’t have to feel guilty for not doing anything, I dreadlocks morning because I will feel guilty for not being able to function.

One of the drugs you take is Amitriptyline. This can leave people with real ‘hangover’ type effects if they take it through the day or too late in the evening. I was advised to take Amitriptyline in one go by 8pm. When I do this, it doesn’t affect me badly the next day. A couple of days ago I forgot to take it until 10pm when I went to bed and the following morning I was quite muzzy headed. And this is after having taken it for years.

You can also get a drug to help with fatigue - Amantadine.

But it sounds like you need to see a doctor who can go through all of the drugs you take, sort out which drugs you are taking for which symptoms, figure out if they are working, decide with you the best times and dosages of each to take, and taper off those that are either not working or causing too many side effects.

Some neurologists are very good on drug treatments. I am very fortunate in that I see a Consultant Rehabilitation Specialist who is fantastic at sorting out drug therapies and has made a real difference to my fatigue levels just by advising when and how to take various medications. Perhaps your local hospital also has a rehab specialist?

Sue

Sue thank you for taking time to reply to me.

I do take my Amitriptyline early evening now as I wondered if that was the culprit.

I will try to get a referral to someone who can look at all of my meds…I do get a review by the pharmacist every year but really

all he wants is to cut my meds down to justify his role.

So fed up.

I take cannabis high in cbd at night for pain and to help me sleep I wouldn’t be able to cope without it.

hiya anon thats taking amytrip

i take 10mg at 7/8am then 5pm. dry mouth is minimal and it does take the edge of the pain.

am well aware its usually taken at night but neuro ok with me doing it this way.

ellie

Hi Ellie, thanks for your comment. Interesting read Ami taken am, I guess it would help pain but do you not get really tired during the day from Ami making you sleepy ?

hiya anon

i use this short term when needed-several times over 13 years. short term for me is up to 6 months when i relapse. am currently weaning myself off the other painkillers first then the amtrip… it makes no difference to tiredness but i have never waited until 10/11 to take them. i know that i am lucky that my gp/neuro trust me as i do them. drugs affect us all in diff ways… always ask your gp/neuro-a good one will say let us try it, and less effective one would say-i am the boss!

i hope that u r listened to.

ellie

Hi Wanderer,

I read about similar experiences and the syptoms you described from an article Meeting MS patients at the point of their (unmet) health needs.