Hi everyone , I’m desperately searching for advice help with my ever increasing problem with spasticity and spasms in my legs.I feel like both my legs turn into heavy tree trunks and my feet are superglued to the ground. During the night if I wish to move or bend my legs I have to lift my leg with my arms and forcibly bend my knee ( if this description makes sense). In December 2015 my then neurologist ( never seen the same one twice!) prescribed Gabapentin, 1ml morning 1ml evening. As it was Christmas/new year it took 6 weeks for the neurologist’s letter instructing my GP to start supplying the medication to arrive at the surgery.I did a very stupid thing during the waiting period, I GOOGLED gabapentin and became terrified of the possible side effects of taking the drug and consequently have not taken them. My follow up appointment with yet another neurologist was 6 months later . I explained what I had done with "googling "the drug and why I became scared to take it. I was kind off hoping he would set my mind at rest and encourage the use of it. No, he just asked if the spasms/spasticity was painful at night. No it isn’t painful just very annoying and difficult and greatly restricts my ability to walk. His opinion was, “well gabapentin might increase the muscle weakness so if your not in pain don’t take it”. I just don’t know what to do, neurologists don’t have a single second to spare you to discuss anything, they just want you out the door as quick as possible and get the next person in. Can anyone help to remove my fear of the possible side effects of this drug? I live alone so can’t risk being confused ,disoriented and unable to think my way through simple daily activities .Sorry to ramble on but I’m sure you are the only people that actually understand my problem. Thank you for reading this.
Hi hun.
I know how scary it is, relying on drugs to help with our symptoms. Every drug we are prescribed, has side effects. Reading the leaflets that come with the meds, is enough to make you not take it or be constantly in a state of anxiety.
The thing is, they have to put these warnings in to cover their own backs, should anyone try to sue them! Not everyone suffers the same side effects. Some suffer none at all!
A district nurse told me, that she knew her patients would google everything and advised me to only read NHS info and that`s what I do.
I dont have MS, but a very similar condition, with stiffness and spasms. I used to take baclofen, which did help, but it can weaken the muscles and cause falls. I feel that`s what happened to me, to make me a full time wheelie.
That wont help you worry less, I know. But there are lots of people here who are fine on baclofen and have kept their mobility.
Ive never been on gabapentin, but again, there are folk here who do and I hope theyll reply to you and calm your fears.
luv Pollx
Hi,
The list of side effects is written in a way that is needlessly alarming. Far better to concentrate on the benefits, that are far more likely to happen, than any of the side effects listed. The only time to be concerned about side effects is after you get them, not before. If we applied that reasoning to every action, we’d spend all day in bed sipping nothing but filtered water.
Effects such as dizziness, confusion or disorientation are more likely there to protect the manufacturer than predict an outcome.
Your GP or neurologist will deliberately start you off with a low dose to check how well you tolerate it it. Only increasing it as required.
The Hippocratic Oath includes the sentence:
“I will apply, for the benefit of the sick, all measures which are required, avoiding those twin traps of over-treatment and therapeutic nihilism.”
Note the words “avoiding” and “over-treatment”. If you can’t trust your GP change him/her.
I hope that helps.
Anthony
hi
i stopped taking gabapentin because it made me so bloated and constipated.
baclofen made me feel unsafe on my legs so stopped that too.
have you tried magnesium?
you can get it in an oil spray which is brilliant for massaging into the legs.
transdermal is more effective than orally taking it.
sometimes it is just trying something new that has a good effect.
placebo? don’t know, don’t care as long as the spasms stop.
carole x
P.S. I was on gabapentin but I needed a stronger drug and moved on to pregabalin and then amitriptyline.
A.
I have been using tizanidine for a lot of years now and I found that it has helped me to do so much more than i could have ever hoped for, for myself I’m not aware of any real side effects from it.
Thank you everyone for your support. I really think that I have got myself so bogged down with negative thoughts of “possible” side effects that I’ve failed to see the benefits of the drug. The comment made re the time to worry about side effects is when they happen NOT before is sensible. I think I need to relax and perhaps start the prescribed medication as clearly my way of doing things , not to take it, have clearly not helped. I’m using my wheelchair in the house now as well as outside and getting less and less sleep as I battle to find a comfy position in bed. 10-15 yrs ago I would never have questioned a drug prescribed by a Doctor, I"d have just taken it without too much thought, so why do it now? ( because we can!!!).
That’s the ticket kid!
Try not to over think stuff…says me, the queen of over thinking, as well as the Icene!
Pollx
I take baclofen & gabapentin for my legs and nabilone sometimes. Get some of that magnesium spray and rub it in, it really helps me. I think the brand is better you.
Sonia x
Thank you Sonia, I’ll have a look on line for the spray, not something I’ve ever heard of so shows how useful this ms forum site is for sharing information. Carol said she also finds it very useful.
Hi Dograbs
Another treatment to help ‘turn off’ spasticity is ‘Botox’ which is injected into specific spastic muscles. For me in my right leg.
I was pointed in this direction by a physiotherapist and now have it done every 3/12.
Works a treat for me and continue to get input from physio.
Hope of help.
Boojum x
Hi Dograbs
I’ve been on Gabapentin between 1800 mg and 2100 mg a day (split into 3 doses) since the end of 2013 with little if anything by way of side-effects, certainly no muscle weakness. I’m also on Amitriptyline 20 mg at night, to counter the L’Hermittes ‘electrocution’ when I curl up asleep - again, with little if any side-effects.
I’ll list the side effects I have had:
Bit of a dry mouth to start with, but that cleared up and is back to normal.
Initially (with the Amitriptyline) a bit of a fuzzy head/hangover, stopped after about the 3rd week of taking it.
Thank you also Boojum & TheresaB for your comments. I now have a plan of action… I’ve ordered some magnesium spray and will definitely give that a try. If I still find the spasms/spasticity to be a major problem, that’s stopping me doing stuff I want to do,I will get in touch with my ms specialist nurse and see if I can give the gabapentin a go now that I have some good advice and opinions from people who really understand the problem. I will give an update on my progress.