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"Spastic feet" - Is physio the answer?

Some of you may remember I called my GP a couple of weeks ago, about uncontrolled spasticity pain in my feet. It seems my Baclofen (which I once thought was the best thing ever!) has decided to stop working.

I’m taking 60mg a day (3 x 20), which my neuro already thought was too much, although I tolerate it just fine. But recently, it only takes the edge off, instead of actually fixing the pain, and what’s worse, it’s only lasting a maximum of four hours - which, when you consider a day lasts 24 hours - means there’s a lot of hours in the day I haven’t got any effective cover at all. :frowning:

So anyway, today an MS nurse at the hospital finally got back to me. Apparently, the delay was because my GP had given her a number to call her back on, but it wasn;t the right one (Do you remember me saying one of the numbers at the surgery didn’t work? I wonder if it’s the same one, and if they even know?)

So anyway, she was all for me going up to the hospital and having a chat and a cup of coffee. But I’m sorry, I don’t want to go all the way to the hospital for coffee-and-chat - I have zero interest in that. I just want uncontrolled symptoms TREATED.

So the net result is I’ve got an appointment for physio on 22nd April. I know I should try to go along with an open mind, but I’m already fit and active (well, for someone with MS - it’s all relative!) - I do my stretches from when I saw a physio the last time, I do a short workout every night (different muscle groups, including weights), and I walk about 2.5 miles whenever the weather permits, and up to 4 sometimes.

Is physio really going to make much of a difference for someone who’s already this active, or do I just need someone to take control of the damn medication?

So now I’ve got to wait another two weeks just to see the physio, and all the time, the Baclofen still isn’t working… Feel quite disheartened, as two weeks seem like a long time when you’ve got uncontrolled pain (although I know this is quick, compared to the waiting list for some physios).

The other “funny” thing is I told her I’ve got to get to the hospital by public transport, because I don’t drive, and she’s going to send instructions to ring up and book an ambulance! Oh well, swallow my pride I suppose. I suppose most of the neighbours know I’m not well, but they’ve never seen me getting into an ambulance before. I do think it will be safer than chancing things to the bus, as although I can still walk a long way, I’ve got quite distressed, on occasion, standing in the cold, waiting for the bus, plus there’s always the anxiety about: “What if it doesn’t come, and I lose the appointment?”

I can’t afford taxis any more, since I lost my job.

So, we’ll see. Does anyone think this visit will actually be worth it, or will it be another two weeks’ wait for something that doesn’t really help, and I’ll still be left begging for someone to fix my medication?

Tina

Hi Tina, I worked as a theatre nurse for most of my nursing career, but through chatting to colleagues etc I was wondering about the logistics etc of your problems, rather than trying to teach you to suck eggs by suggesting things you have probably already tried. Besides which, you have been there and answered many questions for me since I joined the forum. Firstly, Is there not a District Nurse that you can contact who is local to your area and more importantly who will be attached to your GP surgery? They are usually good at kicking docs backsides when it comes to drugs and pain relief and do look after a lot of MS patients. There is a good chance they could help by calling the MS nurse direct and asking for more input from her. The other thing you could also try is getting someone to arrange a hospital taxi to take you to your appointment at the hospital. All hospitals will have this service, I am sure if you ring the hospital switchboard and ask them to put you through they may arrange something for you, save the embarrassment of having to use an ambulance, and having to wait around until the other end of the day for another ambulance to return you home. Unfortunately, I have seen patients sitting waiting all day to get the ambulance home, and when you are tired and in pain, this is the last thing you need. Hope this is of some help. Sam xx

Thanks Sam,

I was led to believe it was probably an ambulance, but perhaps that’s me jumping to conclusions?

Maybe it IS a hospital taxi? Would be much better, if so - I don’t really want something pulling up outside with darkened windows, and “AMBULANCE” in mirror writing across the bonnet. Not very discrete, is it? LoL! I was also a bit worried about the problem you said, about not being able to get back home again. My poor mum was stuck at a hospital for hours, in similar circumstances, because she had to wait for whenever they could do it. And then it was about a two-hour journey to go ten miles, because they went all round the houses, dropping off every other patient, before it finally got to her turn.

If that would be likely to happen, it would probably be worth paying for the taxi I can’t really afford, just to avoid it.

I also forgot to ask how long the appointment would last, so I don’t know what time to say I need bringing home. Looks like I’m going to have to phone them back anyway, and ask how long should I allow for the appt.

Tina

x

They probably have booked an ambulance, but I don’t see why you can’t ask for a hospital taxi instead. I think under the circumstances you can ask, even if you don’t get and you end up having to take the ambulance they have booked after all. I may be naive in all this, but under the circumstances, why can’t the MS nurse come out to you? She of all people should know just how debilitating a problem it can be, especially without the necessary help from friends and relatives. Perhaps I am talking out of my bum, it happens a lot these days haha xxx

As it’s my first and only contact with an MS nurse, I’m no wiser than you, really. I doubt they make housecalls unless you’re housebound, which I’m quite clearly not. Besides, I’d have to tidy the house if she were coming, and I’d find that more stressful than a ride to the hospital in the ambulance, so probably not a great idea.

I’m not seeing her now anyway, as all she was offering was a chat and coffee - not really the solution to the problem, as it’s not moral support I’m after (Can come here for that!), but somebody to take ownership of the problem of permanently painful feet!

I don’t know why it seems so complicated. I’m only asking for day-to-day help with symptoms, and not a particularly rare or complex symptom, either. Now spoken to the GP, who’s passed me on to the MS nurse, who’s passed me on to the physio, and still a fortnight before I have the appointment for that.

Meantime, still making do with meds that aren’t working. Now not working with added diazepam, either. The other night, it was so bad, it crossed my mind I must have forgotten to take anything at all. However, I’m pretty confident I did take them - they’re just not doing the job any more.

Tina

Awww Tina, I really feel your frustration with this whole situation. The only last thing I can suggest is to find out where your district nurses are based in your area. They usually have a base in each town. Even though you haven’t been formally referred to them, I would give them a call, explain your situation and that you are in constant pain and no one seems to be helping. Their knowledge of pain relief is usually fantastic, as they are experts in the field of pain relief in palliative care in the community. Also hospices usually provide services for people with problems such as MS not just patients with terminal illnesses. Again, they are fantastic when it comes to pain relief. They tend to have drop in centres. Hopefully, there isn’t one too far away from you, that you could call. They will probably arrange transport too. I hope you don’t think I am telling you stuff you already know or have experience of, but short of coming to your house and helping you, I feel totally helpless and now out of possible ideas for somewhere for you to turn. Two weeks and a simple physio appointment is far to long to have to sit tight and suffer. Cold calling any of these places that are here to help you is worth a go if they can give you a better quality of life. Do you take amytryptilline? Please let me know how you get on. (((((((((Big hugs)))))))) Sam xxx

When they offer an ambulance they actualy mean one with several seats. This means you are picked up then go on a ride to collect other patients. This can take an hour or so and the ambulance seats are THE most uncomfortable seats ever! Having been in one I’d never do it again and as Sammy says it is soul destroying sitting waiting for the return journey. I think that I would ask for an ambulance taxi if I were you. Hope you can get the help you need to sort out your pain.

Deb

Hi Tina, I`ve had physios come to see me at home, many times.

Yes, I do think it is worth seeing them, as they may have ideas we havent thought about…afterall it is their job!

I also have night spasms in my feet, but already take 30mg baclofen at night. I tried increasing it, but have other problems as a side-effect, which I dont want again…swallowing my tongue and wetting myself more. When a spasm occurs, I change my position as soon as I can…with limited mobility, this can take a while!

I wonder if a baclofen pump would be of interest to you? it delivers the drug when you need it…unlike the tablets.

Hope the appointment brings results.

luv Pollx

Hi Poll Doll,

I thought Baclofen was God’s gift, when I first started, but it’s no longer doing the trick. I’m already on double the amount of Baclofen you’re on - which I tolerate just fine - but it’s no longer working, even with added diazepam.

No, I’m afraid I would not even consider a baclofen pump. Surgical intervention is far too radical for me, as I’m fully mobile, and nobody (except me of course) would ever even know I’ve got MS. Surgical devices is a step too far, for someone that doesn’t use any aids or appliances. I think it’s very unlikely to be suggested. If we tried everything else without success, it would be my absolute last resort, but hopefully, we’re a long way from that yet.

In theory, I could still raise the oral baclofen, as I’m still well inside the maximum daily dose. But as my neuro already thought I was taking too much, I don’t think I’m going to get the go-ahead for that. Probably need a switch to something completely different.

T.

x

Hi again.

The maximum dosage of baclofen I was ever on was in the days when I was still walking. Because the spasms were so bad…literally had me in agony and tears…i kept upping the dose (I was told to find my own level, as are most folk) and at 70mg a day, I was falling all the time, as my muscles were weakened by the drug.

I get what you mean about staying away from elective operations…it was just a thought…I wouldn`t fancy it meself!

luv Pollx

I’d never say never, Poll, because the day may come when it’s necessary.

But I think to go from a completely independent-living person, with no aids or appliances, to having a permanent indwelling device, that you’ve always got to mind and look after, is a huge leap in how “medicalised” and dependent life would become. Sometimes there is no choice about these things, and then we have to make the best of it.

But as you say, for me, at the moment, it would be elective, and not to be taken lightly. To be honest, I think if it was the other way round, and I wanted it done, I’d be hard-pressed to find a consultant willing to put me forward. I’ve never heard of it being suggested for anyone who hadn’t tried everything else first.

Tina

x

Hi Tina I think there are a few issues here. First, well done to the nurse on calling you back. However, I don’t blame you for not wanting to go to the hospital for a coffee and chat with the nurse, so well done to you for saying no to that. I guess the reasoning is that some people need the emotional support that this might bring and she doesn’t know that you don’t need this. I usually enjoy a coffee and a chat but I wouldn’t have gone either! I don’t know if physio will help you or not. Since, as you say you walk and are mobile then perhaps you are doing all you can and physio will have no benefits for you. However if you go , do go with an open mind, the physio might have ideas to help you. But most of all I understand your frustration, if your gp can not or will not prescribe you anything else then you need to be seeing someone who can. The nurse won’t be able to prescribe you anything so why waste all this time on seeing a nurse. Tbh, I think the nurse referring you to a physio is more because it is something she can do rather than it being the thing that will help you. Im not a huge fan of the ms nurses, I see them as an extra layer of bureaucracy before you get the help you need or want. Mine would have me there for a chat(without the coffee) every six months but I refuse to go more than once a year. At least I’m on betaferon so understand the need to stay in contact with her. I also don’t understand why your gp can just write you a prescription to try zanaflex. It might not work but it might and then at least you would know one way or the other. As for the ambulance, yes I would wonder too what the neighbours would say, but I you do go fo the ambulance tr no to worry what anyone else thinks an yes it will be patient transport with lots of people picked up and dropped off so it will be slow. I haven really been any help have I? Cheryl:-)