NW I had a lot of pain and take medication for it: Gabapentin, Amitriptyline, Paracetamol and Zomorph. It sounds like I should be zonked out but I’m not. All drugs were started low and increased slowly, yes I’m dopey after my nightly dose of Amitriptyline and I had to take it easy with each dose increase or change in medication but I’m as alert as most of the MS sufferers (usual brain fog and fatigue considered). My Neuro was amazed at how alert I am as I was already on this regime when referred, he doesn’t like unnecessary meds but believes that if I’m comfortable, which I am, then my quality of life is good. “If it isn’t broke, don’t fix it”.
All of us are individual with different situations, conditions and symptoms. I’m very glad you manage with few drugs but not everyone can. I’ve discussed reducing my meds with my Neuro but he isn’t keen as I also have cord damage. All I’m trying to say is that some of us need medication, some of us feel the need to try anything to get results. We can’t make others feel guilty or scared to choose different routes to those you opt for.
If I used ice packs I’d be in agony, heat suits me. We’re all different and I feel that the decision Steve has to make should be his own, we can guide him. I’m a guinea pig trialling a new disc in my neck, it’s not a bad thing. If nobody participated in trials medicine would not progress, but I understand your reluctance and respect it.
Cath, Yep I understand. This disease affects vitually everyone it touches in different ways.Sure there are some common denominators but they tend to be the relativley easy to manage ones. Thats why its difficult to give advice one individual to another as you can only feel your own pain.
I guess after extensive reading of many an anecdote,I’ve come to the conclusion that the disease is forever moving and forever changing shape, one drug that helps one symptom seems to create another or enhance another. Just my two penneth worth for what its worth. Maybe Im just lucky to be getting away with it thus far and if and when the pain becomes intolerable I’ll take anything to relieve it. Just like anyone else I guess !!
You’re really lucky to be able to avoid meds at present. Maybe you’ll be one of the lucky ones who don’t get pain, not everyone does, I hope for your sake that you don’t. As you say it’s one of those illnesses that affects us all differently, and our symptoms can differ so much day to day. I just hope that you don’t dismiss treatment if it would benefit you. Take care
Cath, there is another thread on here about the wheldon protocol involving anti biotics. I was up over night till 6am researching that. So Im open to new treatments or even recycled ones,I did the same with Ampyra but that took much longer.
It takes forever to balance out the goods and bads as most of it is annecdotal when you scratch below the surface a bit. Trouble is nearly all these drugs and treatments seem so plausible but as I say keep reading and most of the time theres very little hard proof especially with Fampyra.
The anti biotics theory is interesting though as I beleve MS is triggered by a virus or virus’s and certainly with me had bad flu and diahorea problems leading up to diagnosis.
Pain is subjective. I have terrible pain and headaches at times especally when its hot and humid. Bottom line is there is no way of measuring one persons pain and tolerance to it than anothers.
All I can really say is sometimes Its difficult to think about anything else apart from the pain but someone else may have experienced worse or on the other hand may tolerate it better, who knows ??
Hi nw1 The only issue I have with the antibiotic theory is that antibiotics don’t have any effect on viruses. I do realize that some people think they’ll have an effect but they’re actually not that good for you in high doses either, they kill off all your natural “bugs” leading to thrush, resistance and rotten teeth. As you say though everyone has an opinion. I’ll be the one of the first to volunteer if someone offered me a treatment I thought was viable to keep this at bay or cure it but unfortunately there’s nothing I’ve read up to now that will keep me more comfortable than I am at present. Things might change and I’ll review my decision but my symptoms will be very different to anyone else’s as many of mine will be caused by my spinal cord injury.
Anyway, I wish you well, and remember you need to sleep too, reading until 6am won’t benefit you either. I get lost with time too and have done the same thing a few times and playing catch up is really hard.
Hi Cath. Sleep is a funny one. I sleep till 2.30pm everyday and stay up most of the night but usually get to bed around 3am. So about 12 hours sleep per day . I do that because of economic and daytime boredom reasons. Takes me about an hour or so after getting up to be at my best.
Personally think Im getting too much sleep as the longer I sleep the stiffer I get but on the other hand the normal 7-8 hours means more boredom more smoking more electric and more gas consumption.
Should really spend day time hours at gym but that costs.
I could sleep for England but I reckon that just leads to qucker deteriation. Its a balancing act of many different factors. A healthy adult needs 6-8 hours and Im trying to stick as close to that as possible.
Hi nw Firstly a big welcome to our little gang! My sleep is all over the place too…I often wonder if my body would prefer to be up in the night and sleep in the day. I normally try to do what I think my body is telling me too. I think an awful lot of us have crazy sleep patterns…but I also think that we also need far more sleep than ’ normal ’ people. As to the cost of gas and electric…did you know that quite a few of us with MS are entitled to a rebate from our suppliers. Have a look on your suppliers website to see if you qualify…hope you do. Best wishes, Nina x
I also try really hard to find a sleep pattern that suits me but I’m struggling. I can’t go to bed unless I’m tired. Have to get up at 07h00 as my daughter has to leave for school at 8. By 3pm my eyes are heavy, fatigue is awful, then I feel asleep which beggars up bed time at 10pm. I’m not winning either. Oh the joys. Well luckily school’s out now for Christmas so I can have a lie in. What a wonderful Christmas present that is!
Hi nw Firstly a big welcome to our little gang! My sleep is all over the place too…I often wonder if my body would prefer to be up in the night and sleep in the day. I normally try to do what I think my body is telling me too. I think an awful lot of us have crazy sleep patterns…but I also think that we also need far more sleep than ’ normal ’ people. As to the cost of gas and electric…did you know that quite a few of us with MS are entitled to a rebate from our suppliers. Have a look on your suppliers website to see if you qualify…hope you do. Best wishes, Nina x