I am 40 and have been recently diagnosed. I have tried to cope without medication but finally gave up when my specialist said my wierd new symptons was the MS hug. The pain in my legs and the fatigue have never left me and I have had that since end of January. I have just been put on gabapentin. I am really wondering if it is normal to feel this way all of the time or should if really have disappeared? Thanks for your help.
Symptoms can linger for ages, they may not disappear at all but calm down after a while. I have permanent pins and needles in my left arm as the nerve is permanently damaged, when I’m stressed or tired it can feel much much worse. Ruth
Hello Hopefull, Sorry about your diagnosis. I’m 42 and was diagnosed in June. I’ve just been out with a friend and that’s the first time I’ve felt ‘normal’ since March. I was prescribed gabapentin about a month ago but stopped taking it as I had a relapse and was on steroids. I just found it too stressful worrying about what was an ms symptom, what was relapse, what was side effects of drugs etc. I had started to believe that this was my ‘new normal’ but today feel so much better. I know that I’ll have crap days and fab days but this is the first time in months that there will be periods when I feel like my old self. Have you been diagnosed with RRMS or PPMS or spms? Are you on dmds? I just wanted to say that I could have written your post just a couple of days ago and now, suddenly, feel hope. I hope you do too shortly xxx
Thankyou for letting me know about your experiences, they were helpful to me in knowing the way I still feel is normal. Hi Sunflower77 I have been told I have RRMS. The only drug I am on is Gabapentin and yesterday was the first day I increased it to 2 capsules. Each capsule is 300mg and I was told to increase it slowly. I still have pains in my legs but I am finding it easier to walk so hopefully people at my childrens school will stop asking if I am alright! I have found it very hard to get my head around the resting in the afternoon as it goes against everything that my head tells me as there is always so much to do in my household and I cannot stand seeing it piling up and I do not want to rely on my husband to do things after he has had a hard day at work. It is a massive learning curve for me and also a rollercoaster ride which I want to get off of! xxx
Hi hun.
I guess I am lucky in that my children are grown and babysitting grandchildren is hardly ever asked of us now, so I can rest, go to bed, whatever as my time is my own.
But on the days when I really feel I need more rest than other days, my hubby has to do it all.
I always say to him Is it alright if I stay in bed today or rest in my recliner? He always says it is fine. But I still feel guilty when he is toing an froing with armsfull of washing, mopping up after our semi-incontinent 14 yr old toy poodle, cooking and washing up etc.
But with a young family to care for, you wont have the opportunity to rest as much as you need to.
I would urge you to rest when you can and always accept any help if it is offered.
A new dignosis of MS takes time to accept and accommodate into your life. Look after yourself and never beat yourself up for having a bad day.
luv Pollx
Hi Hopefull.
Sorry to hear about your diagnosis, I was d/x 8 years ago and my MS Hug and painful legs etc come and go according to how much stress I have around me at the time. My MS hug is bad at the moment and that is probably because hubby had a recent knee op a few weeks ago and is recovering. The worry of that might have caused it to worsen.
It takes a while to get your head around d/x. Try not to worry. You will be fine!!
Shazzie xx
[quote=“Hopefull”]
I am 40 and have been recently diagnosed. I have tried to cope without medication but finally gave up when my specialist said my wierd new symptons was the MS hug. The pain in my legs and the fatigue have never left me and I have had that since end of January. I have just been put on gabapentin. I am really wondering if it is normal to feel this way all of the time or should if really have disappeared? Thanks for your help.
[/quote] Hello Hopefull, and wellcome. I’m 57 and just diagnosed with ms. I’m afraid what your feeling are normal symotoms of ms…what does your gp say?. Just take each day as it comes, I’m sure some days will be better than others. There’s lots of information on this site so learn as much as you can but remember were all different so your experience of ms will be unique to you. There will always be some lovely people on here for you to chat with and discuss any worries, so don’t ever feel your on your own. Lots of hugs
Hi Hopeful,
Like Ruth I have permanent pins and needles but in my feet. I’ve had it for 12 years and to be honest I forget whats its like not to have them. I also have a numb ring around my middle of my body. Again I’ve gotten used to it. Some symptoms will stay with you and some will come and go. Buts its amazing what you can get used to and deal with when you have no choice.
Take care hun
JBK xx
Thank you so much everyone for your kind words it really means alot to me to have found some extra support and advice outside of my wonderful family. I am so pleased I had decided to join this forum as hearing all about your symptons and how you cope will hopefully help me to do the same. xxx
Hi Hopeful
I’m not officially diagnosed - been symptomatic for 2 years in limbo but it is looking very much so like MS. Waiting for tests in the next month.
I’ve had the hug on a number of accasions and it’s been my worst symptom. There are things you can do to help yourself, different things work for different people:
- Hot water bottle (not too hot if hot makes you worse). I found this on my back where the hug was made the bhurning pain I get along with it more bareable.
- Wear loose clothes - anything pressurising will make those intercostal muscles more likely to spasm
- Stretch and deep breathing to try and keep relaxed as possible
- Avoid full meals
Thats about as much I can think of at the mo.
Relapse times can vary from person to person and recovery can also vary and sometimes we don’t recover completely. Spinal issues tend to take longer as it’s haqrder for the body to reroute those signals. My first episode take 1 whole year to recover but I was lucky to completely recover at that stage even though I had had another episode at least during that time.
Hopefully you have an MS nurse? who can help and give advice. Have they discussed disaese modifying drugs yet for you?
Best of luck
Reemz
X
Hi Reemz Thanks very much for letting me know how to cope with the ‘Hug’ I will definately try the relaxing techniques as I know I tend to tense up even more and panic about these wierd feelings. I know I have lesions in the brain and also one or two I can’t remember on my spine. I was unaware it takes longer for the body to reroute the signals when you have spinal lesions. I do have an MS nurse who has just put me on Gabapentin and no she has not discussed disease modifying drugs yet. The Gabapentin has given me headaches at the mo and I have been on them since last Wednesday so I am hoping my body will start to get used to the drug and the headaches will go. My next appointment to see my neuro is in February but my nurse says if we need to see him earlier she will just give him a text to get me in! I do find it hard not to do anything and rest it goes against everything for me and I just cant leave things alone when I know they are there to do even if I cant see them. Thanks for the kind words and advice it is much appreciated. xxx Karen