@domalip

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domalip

Increasing nerve pain

Hi all, I just wanted to ask you all a quick question as its been playing on my mind and I'm not due to see my MS Dr until the new year. I had my first relapse in October 2014 which affected my lower body. After steroids it all went back to normal apart from this lingering pain around my knees. It feels like I've ran a marathon everyday. It was on / off until about August, were some weeks it would be more noticeable, some weeks not so. Then from August the pain has been intensifying, I notice it all day every day now. I've been on Gabapentin for 3 months and take 1 - 300mg pill before bed. At first it helped, now not so much. My question is, does this mean that things with my legs are getting worse? The mobility in my legs seem fine, but I'm not sure if more pain means the situation is getting worse? Thanks, V

Stumbler

@Stumbler

@domalip , not all pain relief works for everybody. Gabapentin is the usual first choice, as it's the cheapest. Have a word with your MS Nurse and let her know the situation. Pregabalen might be a better choice for you. However, both Gabapentin and Pregabalen are for Neuropathic, or sensory, pain. If you feel that the pain is more physical, then you may need to see a neuro-physio. MS can cause areas of weakness and we try and compensate. And this compensation can introduce bad practice, putting unnatural pressure on parts of the body. A Neuro-physio can identify these problems and suggest exercises to resolve. Once again, your MS Nurse is the first person to talk to if this may be an issue,

insomniacoffeelover

@insomniacoffeelover

hi @domalip, yes i have nerve pain in my right leg after a small flare up from the stress of diagnosis a few years ago. at first i was driven demented with the pain and still have days when the pain in my leg, bum and pubic bone all solely on my right side can drive me to distraction. i had one of those days yesterday actually. i take amitryptiline (not sure of the correct spelling sorry!) which has helped a bit. i don't think it means the situation is getting worse necessarily. you can have intensifying / new symptoms without having new lesions. hope this helps :)

Monica2015

@Monica2015

Hi @domalip, I think @Orlando27, when he is back on the scene, will be best placed to provide info on this issue, as I know he suffers from this. I do also, but less so.

Monica2015

@Monica2015

@orlando27, thank you for this. Ironically, I am subscribed to this and received the same myself and my interest was piqued! Hmmm.. May I ask if you were on the month's trial, how significant the improvement was, and if you continued with it thereafter? If not, was the cost exorbitant, and this the reason? Would you take this drug after lemtrada? Or after a period of time? How are the steroids working for you incidentally?

domalip

@domalip

Thanks everyone for your input. @orlando27 - I've been on Tecifedra for exactly 6 months now, since which I've had no new relapses. I wouldn't say it's a new pain, it's been there since my first relapse but I'd agree it's been intensifying. It's not burning pain, more throbbing/heavy feeling. Luckily though I don't feel like it's affected my mobility as I'm still playing football without any issues. My main worry is that it's a sign that things are getting worse and mobility will become affected.

Monica2015

@Monica2015

Merry Christmas all!! @orlando27, that's a result!! What kind of improvement did you notice immediately incidentally? Also, did the nerve pain coincide with you commencing Amprya? Will certainly call the manufacturers after Chrimbo. So did the steroids alleviate the nerve pain fully? Fatigue meaning walking impairment or differently?

Monica2015

@Monica2015

Hi @orlando27, finally found you again! I'm surprised re your account, as when I questioned my neuro last year, he was most dismissive of it, stating that I would know from the stats, it was unlikely to work and he knew how much I detested drugs, especially if they had SEs and failed to deliver! However, that's amazing if it had that impact upon you. Am going away tomorrow but will look into on Monday. Re your relapse, that's excellent that the steroids suppressed the inflammation that was the root cause, did your neuro have any explanation as to what might have caused this, as it is some time after the infusions so does not appear to be directly related to the immediate aftermath of increased symptoms? It would be most interesting to find an accurate representation as to the internal goings on to produce such a severe episode of one of your previous issues some months after the event? Is this something your friend can relate to? In any event, I'm pleased that it's under control and manageable and you are sleeping better. I know first hand how torturous constant spasms/pain during the night can feel. It's enough to tip you into insanity...Is your nerve pain more pronounced at night time or during waking hours also? How are the rest of your symptoms and your walking generally now?

Monica2015

@Monica2015

Orlando27, your testimonial is astonishing. I have never heard from anyone first hand re the impact of it, as no one in my hospital that I speak to has ever taken it, and I'm in the main hospital in London and make a point of speaking to anyone and everyone, questioning, enquiring and generally being inquisitive as is my nature. Hopefully, not too intrusively. Quite honestly, I do not know anyone who has ever been offered it even. When questioned, my neuro admitted re the free trial but stated that due to the cost, most people did not attempt it even. However, given what you say, I agree, we should most definitely be given the option and offered it as a matter of course. Most likely, the issue of cost on the NHS is one of the factors as to why it is, not within my knowledge anyway, offered it. You must be so relieved to obtain relief fairly early on by taking the steroids. In your experience/ to your knowledge , is it quite normal to still have relapses post I think I read that it was still possible but have not "spoken" to anyone who has experienced a clear cut relapse afterwards.

Monica2015

@Monica2015

Orlando27, were you having relapses prior to Lemtrada out of interest? Yes, do let me know what the view is in Feb. Noted re famprya. Would love to replicate its mechanism of working via a natural non drug route.. My idea of heaven!

Monica2015

@Monica2015

How long did the steroids take to assist with your awful nerve pain attack?

Monica2015

@Monica2015

@orlando27, that was fast acting (the steroids)... Have to wait to see my Neuro again re famprya I understand. My recovery is both convoluted and confusing. Walked with crutches for 15 m today continuously, on holidays today, and thereafter, my back hurt, my bladder went into overdrive, with the result I had to enlist the aid of a wheelchair if I was to actually sight see at all... Somewhat disappointing but again reminding me, firstly re pacing myself, and secondly, another reality check...

Monica2015

@Monica2015

Orlando27, I wish!!! Only did 15 mins and then my legs simply seized up! As we are away, my husband and son insisted they wheel me around in s wheelchair rather than deposit me in a coffee shop and I miss all. I was forced to swallow my pride, and agree. It was rather fun being wheeled by my son, although I was ecstatic to be back on my crutches even a few hours later, as I had felt that my legs had lost strength from even that period of inactivity! Thank you, I hope you do too. Re effects, difficult to answer definitively. I was walking 7000 steps with one stick (lightly) in August, but 2 further releases rendered my legs useless again. So that was the baseline pre lemtrada, except that I was required to take a course of steroids a few weeks prior then of course in addition the the lem. Initially, in hospital, my bladder simply failed to hold urine at all (never been close to this previously) , that was the first bizarre thing I noticed: absolutely zero bladder control. This calmed down to normal levels within a few days of leaving hospital. However, the spasms at night went into orbit. I did feel as if my legs felt somewhat more stable, but then the infections x 2 occurred and all became significantly worse again. Some days I can only manage a hundred or so steps, although yesterday it was approx 2,500 but st a steep price! My legs feel weak and extremely stiff today, and the balance is abysmal despite the use of crutches! Today, I'm staying in the hotel.. So in short, j feel my progress is rather limited in 8 weeks, especially considering how much I was walking in August, having started treatment in Oct! I'm hoping to see improvements but do not feel stable. My stomach is still dire, and my bladder overactive. I actually obtained solifienacin and took it last night, Cannot feel or see any discernible difference yet. All rather unpredictable currently, but once my bloated stomach becomes flat again, then I feel that might be the signs of some form of stability. I feel it's the infections that have hindered our respective recoveries...

Monica2015

@Monica2015

@orlando27, 1. No, I do not possess any assisted devices, only crutches (donated by a friend) and several walking sticks. I've literally just hired wheelchairs on the limited occasions I have required them. How do they differ from wheelchairs in terms of helping retain mobility, or is it simply for ease? 2.i have a jawbone 24 wrist band to measure my sleep and steps daily. 3. My bladder improved significantly after the zero control in hospital, but is now definitely overactive again, very noticeable when out and about. However, it does start with cold feet, then numb legs which become heavy and then the bladder erupts! This is the first time I'm attempting meds for it, as it is really troubling me. 4.No, I take neither. Tried Gabapentin for a few days but did not feel any difference with spasms. I'm sure it was not long enough, but I'm impatient. Is that a known benefit? Re famprya, I've heard you! Sent an email to the MSnurse and will hope to discuss by phone upon return from break. 5. Again, I'm extremely surprised it has so many benefits, inc the balance. Incidentally, did you experience regular releases pre-lem also?

Monica2015

@Monica2015

Thank you @ Orlando27, how interesting! Is this effect common? You certainly are the expert on all MS drugs. I have usually avoided them and consequently missed out on these nuggets of info. Sorry, I meant " relapses", often typing these messages in the car ...

Monica2015

@Monica2015

@irlando27, I know that it's very difficult to reflect on my former life too, without a tinge of sadness. Your words resonate strongly with me. Well, then I guess in that event, maybe it's lucky (??!!) that I have such frequent and aggressive relapses, subject to your theory. Re the GABA and Bac,specifically what are their separate functions? Which helps with restless legs?

Monica2015

@Monica2015

@orlando26, yippee!!!✊ That's really surreal news... Amazing...From all the horrific pain you were enduring to this! I bet you must feel euphoria! Very encouraging to hear your news for me. I feel better at times, to only revert backwards again when I least expect it, so like you, I'm reticent to speak of significant gains. I literally can alter between the two states within 5 minutes apart. Thankfully, I attempt to take them in my stride and as part and parcel of this whole tapestry of life, coloured more vividly if MS is involved. I know now, not to be as wildly ecstatic until I see consistent improvement, which I can no claim to have, unlike you. So congratulations Orlando! Fantastic news, you must be extremely hopeful for the next step forwards. Re the drugs, does GABA assist with numbness and heaviness also? I'm not entirely certain if that constitutes spasticity exactly. I tried both for a day or two with no improvement, other than feeling like I was totally "spaced out" on the pregab, which really made my decision to discontinue as I'm waaay too much of a control freak to feel my brain was not reacting as quickly as it should. How long would you recommend taking the GABA to have any effect? As is evident, I'm impatient in the extreme! At least some sign that it is assisting, will suffice. Congrats again, I'm very happy for you that you are finally finding some relief!

Monica2015

@Monica2015

Which is considered the least toxic pls?

Monica2015

@Monica2015

Enjoy your meal, you definitely deserve a dessert!

Bellas1

@Bellas1

Hi domalip. Don't know if it helps but I'm many years down the journey and although I have days when my legs feel like lead and hurt like hell on resting it is no better or worse than it was. I make sure I walk as far as possible when I can, preferably somewhere scenic as no more running for me but some days I can go for miles and miles and other days have to give up after 1/2 mile. On the days I can't do it, I find being good to myself i.e. feet up and pain meds for a couple of days is better than struggling on.