well chuff me........revelation!

[Inactive_User]

Morning friends! Hope this cooler weather is suiting…I prefer it, but not the rain. Day out tomorrow and cinema…so hope it is fine!

Right, my reason for posting;

Yesterday I called the district nurses, who are always wonderful and come the same day I ring.

I have been having heel pain, when in bed, for a few years now. Ive tried just about every high risk pressure care mattress known to man (and woman) Ive tried silicone, foam and lambswool heel protectors and cavalon barrier cream, plus lots of moisturisers. The nurses call regulalry to check I am not developing pressure sores…thankfully I haven`t, but oh the pain is terrible, and it leaves my heels tender all day. I used to love going to bed, but this puts me off.

So when nurse came yesterday, she had a look and asked lots of questions about the pain. She concluded that it isnt pressure pain, but could be nerve pain! Yeh, that old chestnut!

She advised me to ring neuro`s secretary and ask for a telephone appointment with neuro to see if he could prescribe owt.

Did that today and was told they dont do telephone appointments! I dunno…talk about never let your right hand know what your left hand`s doing, eh?

I already have an appointment booked for November…a yearly follow-up. I was told he cant see me any sooner, but there is a new neuro starting next week and I may be able to see her in Sept. So I am hoping that`s the case.

So, now my question to you guys is;

I am already on 75mg of amitriptyline at night, it zaps my nerve pain in my legs and bum cheeks, but dont think I want to increase it, but is there anything you use for similar pain that would be compatable with amitriptyline? Gabapentin perchance?

I`m taking paracetomol every 4 hours, but they do nowt!

Thanks guys.

luv Pollx

[Candystripe]

Ouch, Poll.

Pregabalin is another one you could try.

Have you thought about LDN. I know it works for some and not others.

C x

[Anitra]

Oh, honestly, Poll, after ALL this time!

You have spoken about this problem ever since I’ve “known” you on these forums - and that’s coming on for a few years now!

Only now, it’s suddenly dawned on anyone that when nothing works, it MIGHT be nerve pain? I know you don’t have MS, but it’s not as if your condition isn’t anything to do with neuro stuff, is it? So why hasn’t this been looked into as a possibility ages ago?

It does seem slightly odd that despite the pain, there has been no sign of you actually developing pressure sores, and all the cushioning and creams in the world haven’t made any difference! Maybe this should have been a clue, huh? (Not to you, but to people who are supposed to know about these things).

Of course, we don’t yet know for sure that the nerve pain theory is right, but it sounds it bit more likely than pressure pain which nothing at all helps, doesn’t it? If it was pressure, you’d think measures to relieve it would have some sort of effect, even if wasn’t 100%. But no effect at all? Does seem a bit strange.

I hope trying a completely different approach does result in it being treatable!

Interesting your neuro doesn’t do phone consultations. I didn’t think they would, because I was also wondering. I know that doesn’t necessarily mean it’s the same where I live, but I’d place money on it. Such a pity. Stupid bl**dy fiasco about getting there - I’ve been sooo ill with it this week, though I know it’s partly me not being able to keep things in proportion. In the grand scheme of things, how much does it really matter if I missed an appointment I’ve rarely found very helpful anyway? Not very likely I’ve missed out on something really vital and amazing, is it? I guarantee he wasn’t about to tell me he could cure me - LoL.

Luv,

T.

x

[Inactive_User]

Hi Poll, My Dad has been suffering with dreadful pain in his feet for a few years now. His GP has finally decided that it is nerve pain and has prescribed Gabapentin for it. This was only last week, so I don’t think the G has Jonas enough time to start working yet. I think he may have to build it up to quite a high dose until it does! Hope you get something to help you soon, Love Teresa xx

[fudgey37]

I really can’t see why a neuro won’t do a telephone appt. for a patient who is not a new case and they are familiar with. It would save him/her time which I’m sure he’d/she’d love and they are not going to see anything on your heel like a pressure sore because I’m assuming that they have this info from the nurse so why on earth don’t they just tell you it’s likely to be nerve pain and prescribe something that would be likely to help. I can understand a new neuro wanting to see you but the old one and his secretary need a kick up the backside. I bet they will suggest increasing your dosage of amitriptyline but you could certainly try gabapentinn. You need to build the dosage up slowly to have an effect. This worked for the ms hug I had last year but not the pains in my arm and amitriptyline worked for the arm spasms last year also but not the hug. It is funny how one med will work on one area of the body and not the other but the body is doing exactly the same thing on each of the areas. very weird.

[spacejacket]

Poll, You could try taking magnesium - have a google - magnesium ms - l know we are supposed to take quite a high dose with our vitd3 - [which also helps with pain]. And of course - apple cider vinegar - [not that again] - well it has worked so well with my gout and arthritic knee. All my friends are on it now - even the feathered/furred and four-legged. l by it by the 20 litre - Somerset Apple Cider Vinegar - is the pure stuff containing the ‘mother’ [ wondered where she had got to] - anyway all natural -no nasty drugs - no side effects. [Magnesium and ACV are a bit laxative - be warned] Would it work dabbed onto your heels?

lf you are like me - and l think you are - try anything as long as it does not get me pregnant or fat!!!

[Inactive_User]

@spacejacket

Poll, You could try taking magnesium - have a google - magnesium ms - l know we are supposed to take quite a high dose with our vitd3 - [which also helps with pain]. And of course - apple cider vinegar - [not that again] - well it has worked so well with my gout and arthritic knee. All my friends are on it now - even the feathered/furred and four-legged. l by it by the 20 litre - Somerset Apple Cider Vinegar - is the pure stuff containing the ‘mother’ [ wondered where she had got to] - anyway all natural -no nasty drugs - no side effects. [Magnesium and ACV are a bit laxative - be warned] Would it work dabbed onto your heels?

lf you are like me - and l think you are - try anything as long as it does not get me pregnant or fat!!!

Pregnant or fat? I would be totally shocked if the former happened…60+ women are unlikely to get preggy, plus I had a hysterectomy 30 years ago, plus I dont do the necessary that gets you preggy! But Fat? yeh, I can do that easily enough!

I really should try that apple cider vinegar. I`ll look for some when I go out.

pollxx

[Inactive_User]

@fudgey37

I really can’t see why a neuro won’t do a telephone appt. for a patient who is not a new case and they are familiar with. It would save him/her time which I’m sure he’d/she’d love and they are not going to see anything on your heel like a pressure sore because I’m assuming that they have this info from the nurse so why on earth don’t they just tell you it’s likely to be nerve pain and prescribe something that would be likely to help. I can understand a new neuro wanting to see you but the old one and his secretary need a kick up the backside. I bet they will suggest increasing your dosage of amitriptyline but you could certainly try gabapentinn. You need to build the dosage up slowly to have an effect. This worked for the ms hug I had last year but not the pains in my arm and amitriptyline worked for the arm spasms last year also but not the hug. It is funny how one med will work on one area of the body and not the other but the body is doing exactly the same thing on each of the areas. very weird.

Hi, yeh you would think a call would be easier and save them and me time in clinics. But the NHS like to waste money and cant see the wood for the trees sometimes, eh?

pollxx

[Inactive_User]

@Tree65

Hi Poll, My Dad has been suffering with dreadful pain in his feet for a few years now. His GP has finally decided that it is nerve pain and has prescribed Gabapentin for it. This was only last week, so I don’t think the G has Jonas enough time to start working yet. I think he may have to build it up to quite a high dose until it does! Hope you get something to help you soon, Love Teresa xx

Hi, yeh it will be a while before I get any new meds to try. GP will tell me to see neuro, so no point ringing her.

Hope your dad finds relief soon.

pollx

[Inactive_User]

@Candystripe

Ouch, Poll.

Pregabalin is another one you could try.

Have you thought about LDN. I know it works for some and not others.

C x

Hi, I did try LDN, a bit before you went on it. It only helped a bit and then stopped, so I stopped buying it.

pollxx

[Inactive_User]

@Anitra

Oh, honestly, Poll, after ALL this time!

You have spoken about this problem ever since I’ve “known” you on these forums - and that’s coming on for a few years now!

Only now, it’s suddenly dawned on anyone that when nothing works, it MIGHT be nerve pain? I know you don’t have MS, but it’s not as if your condition isn’t anything to do with neuro stuff, is it? So why hasn’t this been looked into as a possibility ages ago?

It does seem slightly odd that despite the pain, there has been no sign of you actually developing pressure sores, and all the cushioning and creams in the world haven’t made any difference! Maybe this should have been a clue, huh? (Not to you, but to people who are supposed to know about these things).

Of course, we don’t yet know for sure that the nerve pain theory is right, but it sounds it bit more likely than pressure pain which nothing at all helps, doesn’t it? If it was pressure, you’d think measures to relieve it would have some sort of effect, even if wasn’t 100%. But no effect at all? Does seem a bit strange.

I hope trying a completely different approach does result in it being treatable!

Interesting your neuro doesn’t do phone consultations. I didn’t think they would, because I was also wondering. I know that doesn’t necessarily mean it’s the same where I live, but I’d place money on it. Such a pity. Stupid bl**dy fiasco about getting there - I’ve been sooo ill with it this week, though I know it’s partly me not being able to keep things in proportion. In the grand scheme of things, how much does it really matter if I missed an appointment I’ve rarely found very helpful anyway? Not very likely I’ve missed out on something really vital and amazing, is it? I guarantee he wasn’t about to tell me he could cure me - LoL.

Luv,

T.

x

Hi Tina, to be fair, I never told neuros about this heel pain, as I was convinced it was pressure pains, seeing as the district nurses were treating me for it with mattressess and heel protectors. When they knew nothing helped they said it was something that had to be managed as best I could. No mention of nerve pain back then.

It would be a godsend for you, if you could have telephone appointments with your neuro, especially as nothing useful ever comes of it for you. And all this rubbish with transport you keep having to go through, is a farce alright!

Just by a way of making us feel a bit better about the NHS system we have, I have a buddy from this forum, who lives in USA. She is on tysabri and cant afford it and is trying to find someone who will let her pay monthly. She has asked for charity help but to no avail. Poor lass, I do feel for her. She recently had braces made, to stop her knees from bending backwards and they cost her a fortune. At least we dont have the worry of paying for our treatment.

luv Pollx