julia44 17/04/15
Last reply 3 years ago
PAIN

I HAVE NOW HAD SECONDERY PROGRESIVE MS FOR 10 YEARS AND I SUFFER VERY BADLY WITH BACK LEG AND ARM PAIN , BUT ALL MY DOCTOR KEEPS GIVING ME IS PARACETAMOL, IVE BEEN ON IT FOR ABOUT 10 YEARS AND IT NOW DONT DO ANY GOOD SO IVE COME OFF THEM , DOES ANYONE KNOW OF ANYTHING ELSE I CAN START TAKING TO TRY AND EASE THE PAIN ? OR DO I JUST PUT UP WITH IT

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emz
3 years ago

Hi there, sorry to hear you are struggling with so much pain 🙁 I also suffer, daily, from pain in my legs and I found that regular pain killers didn’t work. After discussions with my neurologist and MS nurses I was put on a medication called Gabapentin which comes in a range of strengths. I’ve found it helps a lot! Why don’t you have a chat to your neurologist see whether anything can be done for you.:)


stumbler
3 years ago

@julia44 , it’s important to understand the cause of the pain, before you are able to treat it.

Having MS shouldn’t cause physical pain, but MS weaknesses can allow us to compensate for these weaknesses with bad practice. This bad practice can cause problems with our posture and our gait, which then causes physical problems.

Have a word with your MS Nurse and see if they can refer you to a Neuro-physio. They can check you out for weaknesses and bad practice and recommend exercises to improve things.

Alternatively, it could just be neuropathic pain, which normal painkillers do not touch, as suggested by @emz.

And, finally, @cameron can recount her tale of back pain, which was ultimately addressed by vitamin D3 supplements.

So, talk to your MS Nurse first. 😉


northernlass
3 years ago

I’m sorry to read you are having such long a prolonged pain @julia44 . I too am a sufferer of back pain which I have had for many many years since I had a fall and landed badly on my left side. I now have a DX of MS and guess which side of my body is worse off with my on going symptoms..!! I have been seeing a back specialist for years who has been giving me “Bilateral Facet joint injections” when I can get an appointment (So far I have just had my 6th batch of injections in 5 years… I could have 3 a year if needed but then MS symptoms put everything on hold while they were investigated) I had my injections yesterday and on waking up from the op I was and still am instantly back pain free.. It has made me realise how draining it is to be in pain all the time.. 🙁 I hope you can get the appropriate relief from your pain .. keep on at your GP as you shouldn’t be living with this constant pain and they need to find out what is causing this pain and treat it and make it go away the best way possible … Best wishes


julia44
3 years ago

hi stumbler
my pain makes me crippled with weekness and i cant stand for long or walk ever , iv had SPMS since 1999 and can no longer put up with it , i dont have a very good relationship with my Ms nurse me and her dont get on which is no help, all im looking for is a break from the pain


stumbler
3 years ago

@julia44 , it’s a sad fact that we need these people more than they need us.

Until you find the cause of the aches, you will not be able to get the right medication. Persevere with the MS Nurse. Be polite and bite your tongue and see if you can progress this issue with them.

Your GP will only be able to help, if he is given the right guidance.

As far as a Neuro-physio is concerned, check this site for your local MS specialist physio and see if you can self-refer.

Good luck.


julia44
3 years ago

no i dont agree with you , why should we bite out tounge and be polite
. polite yes but you need to be treated right . if they dont try to
help and they are not polite and have me in tears and after seeing them
on the first visit then they shouldnt be an Ms nurse, Ms is hard
enough anyway to cope with without the nurse not on my side


julia44
3 years ago

how long have you had Ms ?
im pleased for you if you have a good Ms nurse because i dont


stumbler
3 years ago

@julia44 , you need to start again with your MS Nurse and rebuild that relationship.

It’s down to you really. Is your physical pain worse than the apparent lack of compassion from your MS Nurse? After all, you may have caught them when they were having a bad day.

There is a possible answer and relief for you out there, but you need to go and get it. It won’t come to you.

Good luck.


graham100
3 years ago

Hi Julia 44. I feel your pain. Your nurse isn’t from basildon by chance? You start to wonder if they actually understand what you are saying. The back pain goes to the hip and stops the legs straightening then you can’t walk.


julia44
3 years ago

No Ms nurse should be having a bad day and bring it to work and make me feel bad , she made me cry with her attitude and i never went to see her again, and no Graham she isnt from Basildon im in Cambridge


graham100
3 years ago

Well in that case there is more than one obnoxious Ms nurse. Don’t feel it’s only you. And why should we have to put up with rudeness to get better treatment? I belive you should treat people the way you would like to be treated yourself. And when you’ve been in control of your own business most of your life, it’s not easy taking S–t. Good luck.


julia44
3 years ago

thank you Graham100


fi70
3 years ago

I agree with Graham100, but unfortunately life is not like that and people do have bad days even if it is not professional. if this opinion has been formed as a result of one interaction with the MS nurse then I would say give them another try, but be honest and tell them they upset you last time. If it formed from numerous interactions then maybe you can ask for another MS nurse or get in touch with the MS Therapy Centre in your area and find out if they have any suggestions or therapies available which might help. Anyway good luck I do hope you get some relief from your pain


julia44
3 years ago

No im not giving her another chance , and no i done agree with you about them having a bad day, i have bad days nearly everyday but im not rude to people and i did ask to see another Ms nurse and was told she would get in contact with me , well that was 10 years ago


julia44
3 years ago

im a little stronger in mind these days , i didnt ask to have Ms , let them try and walk in my shoes for a a day then they can judge and then i will take their sh*t because they will understand how hard each day is


stumbler
3 years ago

@julia44 , I repeat what I said earlier, we need these people more than they need us.

You are the proud one, who has the pain. By all means, you can retain your pride, but you’ll also keep the pain.

Mend some bridges, you have much to gain……


tracyd
3 years ago

Our MS nurses are our gateway to the treatment and medication we need. Mine happens to be great, she’s at the end of the phone, in frequent contact with my neurologist and very supportive.

I have made sure that I support her too, I’ve dealt with duplicate appointments, spoken to hospitals and MRI units to confirm details about contrast etc because I know she’s running round like a mad thing working with dozens of other people like me and it takes a moment or two to do something which helps her out and cements our relationship.

I’m sure that she needs me and most of her other patients like an extra hole in her head because she’s the only one for our huge area. If I behaved in an unfriendly, confrontational or unpleasant manner towards her then I would expect to be the last person she would go the extra mile for, but I NEED her to do her best for me.

If you can’t bring yourself to make peace and try to build a positive relationship to get the support and help you need then speak to your doctor and explain that you feel the relationship is too damaged to repair and could you be referred to someone else please.

The alternative to doing this as @stumbler pointed out is your pain issue isn’t going to be dealt with and you’re going to get more angry and bitter about the situation and that responsibility lies squarely with yourself not the MS Nurse 🙁


miskovic75
3 years ago

I was having pain (a bit similar to ‘muscle hangover’, but stronger and present most of the time) some 3 years ago: it persisted for several months, then I switched to DiMethylFumarate and the pain slowly faded.
But it came back 3 months ago, it is a bit stronger this time – as back then. Both times, my MS-Doctor confirmed that it is MS-related.
Also I have no doubt (that it is MS-related) as the pain comes together with exacerbation of other typical MS-issues.
Soon I should get to a medical spa for 3 weeks and I am hopeful, that exercise and the curative-water baths will get my MS-symptoms (especially the pain in my legs) under control again.
For me, the medical spa treatments have brought a remarkable improvement each time!


tabbycat
3 years ago

Lyrica has helped me with random stabbing and burning pains in lots of places @julia44. It is designed for neurological pain. Try asking your doctor for that rather than parecetomol .
Best wishes!


graham100
3 years ago

Hi again @julia44. Just back from holiday & back on my wifi. Have you tried 1 paracetamol and 1 ibruprophen together? That’s good. Paramedic friend swears by it. I find it helps. I was on the plane today, kicking the seat in front as my spasms went into overdrive,, took the combo and in 30 mins it had eased off. Works for me. All the other stuff makes my legs turn to jelly, then I can’t even stand. I take as little as possible, only toxins in my body is coffee and chocolate. Lol xx.


julia44
3 years ago

Hi Graham hope you had a good holiday , i went to see my Ms doctor yesterday and what a waste of time , it took me longer to bring myself to get there than it did to see him , i went in all positive and come out drained and depressed , to cut a long story short i have to live with the pain as he wont give me anything and as for the sh*t Ms nurse he said i can see another 1


julia44
3 years ago

im pleased for you Tacy


graham100
3 years ago

@julia44. Exept my friend request. Then i can private message you. We can really slag them off. Haha. Ps. Holiday was good thanks. Bit cooler than usual but some hot days. Apartment can be cold all marbel. Don’t want to keep using heating,, expensive,, lol


julia44
3 years ago

Hi Graham i cant see your friends request but i sent you 1


loriwho
3 years ago

Hi Julia,
I am new to this site and have RRMS but have suffered with leg,back and arm pain for a number of years and have tried a number of different combinations of pain relief including paracetamol and ibroprofen together, I found this helped short term, but ended up with other issues as the ibroprofen can damage stomach lining if taken long term… I am now relatively pain free at the moment , or should I say pain is there in the background but bearable, thank god for a very proactive GP who has listened to my needs and now after many different combinations I am now taking Pregablin or Lyrica as it is now called and Tramadol after about three months I can see a difference, also partaking in accupunture and HBO therapy along with pilates to keep the limbs moving as we know if in pain we tend to try not to move too much as it can hurt, but this doesn’t always help us… Sorry I am going on and really don’t want to sound like a know it all because I dont…. Just so happy to have actually found a balance that I can cope with after 7 years I can say I feel positive about my future … Good luck you need to find support that you are happy with whether it is professional, or friends and family, keep trying and you will also find that happy balance xxxxx love and hugs


reddivine
3 years ago

Not going to the MS nurse is not an answer. Go back to the GP and beg for stronger painkillers. GP put me on co-codamol for back and knee back which Im told was NOT MS, but of course walking with a stick, made it worse.
Thats only on prescription as is any strong painkiller.
Surprised he has not referred you to orthopedics or x-ray to find the CAUSE of the pain.
Ask to be referred to neuro-physio.
Is there some other reason for not giving you pain management? are you for instance on other meds?


brokendancer
3 years ago

Have you seen a Neuro Rehabilitation consultant? If not, request it 🙂 Mine has been amazing and he said I needed neuro painkillers so I was prescribed them.
Sonia x

Have you tried Pregabalin for pain? It is supposed to be good for neuropathic type pain….similar type of thing to Gabapentin i think. I do take it but only at lowish doses for general anxiety disorder so does nothing for pain!!


julia44
3 years ago

HI IM GETTING TO SEE A NEW Ms NURSE ON THE 19TH SO IM HO
PING SHE WILL HELP, SHE SOUNDS REALLY NICE ON THE PHONE , SO FINGERS CROSSED , WILL LET YOU KNOW HOW IS GOES


julia44
3 years ago

HI SONYA WHAT WAS YOU PRESCRIBED FOR YOUR PAIN ?


brokendancer
3 years ago

So glad to hear you have a new nurse 🙂
I’m taking Pregabalin (Lyrica) now and it’s helpful, L’hermittes hasn’t been noticeablefir ages.
I started off with Gabapentin but it made my scalp itch which is a shame cos I think it can help with spasticity.
Hope you get things sorted soon
Sonia x


krisp
3 years ago

Hi Sonia
How much pregabalin do you take and what’s the verdict on it? I’ve read a lot of pepople take it


loriwho
3 years ago

[email protected] I take Pregablin and have done for five years, my dosage varies depending on how I have been feeling, although I am now back to full dose… I take 300mg in morning and the same at night… I have no issues with this and although I still have nerve pain , it has been a lot worse when I have decreased for too long… There are at this time no noticeable side effects, but different with everybody as we experience different issues… Don’t give up try everything that is offered if appropriate including all the alternative therapies xxx


cherish
3 years ago

Good morning.
I’m listening to what all you guys get for pain and now I feel like a mobile chemist!!
My neurologist puts me to pain management team every 6mnths and has for 10yrs now. But in my case I wonder if they have actually continued to prescribe and prescribe- but never seem to review all the drugs I’ve actually ended up on and have been for 9 out of the 10yrs I’ve had ms.
This is what I am on (most of these for neuropathic pain and spasms)
3600mg gabapentin a day (yes 3.6k)
Baclofen 60mgs daily
Oxycontin 30mgs 12 hourly
Diazepam 10mgs daily
Mirtazapine 15mgs daily
Amitriptyline 30mgs daily
Nabilone (synthetic cannabis) 3mgs daily
Extavia
Peristeen

But I still hurt so bad, the sensations from just above the knees to soles of feet is horrific.
My knees and hips wake me constantly thru the night, it’s like someone sneaks into my room and clubs me then they feel ‘broken’.
So…. Do these tablets work for everyone? I think the answer is defo ‘NO’. I am currently weaning off the morphine, baclofen and diazepam with an aim to be tablet free by the end of year.
I do worry about weaning off gabapentin and amytriptiline though as I worry the sensations could be worse than they are now, that’s a worry.
So I guess some msers will get relief from some of these meds yet it may be a waste of time for others.
God, it’s difficult huh!!
Good luck. 🙂 🙂 🙂 🙂 xx


cherish
3 years ago

So sorry as I also meant to say that these tablets should still be readily available to you all, then that gives you a chance to work out if they are gonna help you or not.
Sorry for all you guys that have to ‘fight’ for the chance of something that may be good for you 🙂 🙂


cameron
3 years ago

Re: poor MS nurses: yes, it’s unacceptable but it’s a fact of life that there is always a minority of professionals who are duds. After you’ve accepted this, you can do two things – a) go elsewhere and/or b) make a stink. As you say, we have enough on our plates anyway, but without making an effort, you won’t change the situation. An MS friend has had such poor treatment from her nurse (who – scarily – is the only route to the neurologist) that her GP is now taking up the issue with the local care trust and with any luck she’ll be disciplined. And I do believe that for every dud there are a dozen excellent healthcare professionals. I really hope that your new nurse will restore your confidence, because I’m sure that feeling as negative as you’ve been will have worsened the MS. xx


brokendancer
3 years ago

Kris – I take 2 x 75mg a day – it’s enough for me as not in too much discomfort just lots of annoying things!

Chersh – that’s a lot of pills you poor thing, to still feel pain is awful 🙁 *hugs*
I also take Nabilone but 1 or 2 tablets a day. I’m thinking of taking 1 before bed as I get forgetful if I take too many during the day! I did stop these after a fall down the stairs – went back to Baclofen as it seemed to make most sense. Then go a bit desperate as stiffness was still so bad and took a Nabilone, 2 hours later I walked up the stairs, one leg at a time 😉 – so a week later I was asking to have it back and was it ok to take with Baclofen? So I’m taking both now and that seems best for me, you’re the first ‘other person’ I know that takes the combination – I hope that helps you, it certainly does me!

Sonia x


baobab
3 years ago

It’s always a relief to read other people are in pain, it’s not sadistic it’s just a load off my mind- I’m not abnormal in this MS experience! Sorry, I don’t want you to be in pain, honest!

I started experiencing nerve pain during my second relapse, the relapse lasted several months and I had another after a mere couple of weeks breather. My nerve pain isn’t always constant but worse if I am ill, over indulge on the vino, at my monthly periods and if I sit at my desk too long. I saw my neurologist yesterday and updated him on this. He thinks it’s not my MS but maybe a trapped nerve. Though he had my MRI results from when the pain started and no sign of this, so another MRI is booked now.
I don’t understand why I see such contradictory information, like Stumbler said MS doesn’t cause pain, but in my information from Rebif, it says that now they know it does, muscular pain may be caused from carrying our bodies in the wrong way but nerve damage can occur, causing pain. My MS nurse confirmed this. Everybody has an opinion but really the illness is so broad and unique to the individual it’s hard to give accurate advice.
The medication I was first given for my nerve pain was Amitriptyline, an anti-depressant! It worked, I had been in awful pain, I took one and the pain completely vanished within an hour, then I conked out, the next day I wasn’t really present.
So…Next Nortriptyline, not as immediately affective as it’s sister medicine and with so many side effects- I gave up.
As for the subject of nurses, ‘we need them more than they need us’ that’s such a sad attitude! Do we really need them? I have had much better advice from this here site, from fellow MSers, my nurse is lovely, friendly and really easy to contact but she is there to take the load from the neuro getting asked questions that nobody seems to really have answers for.

Is it possible to swap MS nurses for those that need to?


graham100
3 years ago

Hi all. As for neurologist and Ms nurses. Let’s face it no matter how many people they treat each week they can’t actually feel the pain your feeling so bottom line they just think that sounds like XXXX so I will give you what I gave them. If it don’t work when I see you again in 6 months we will try something else. So we suffer for another couple of years, and realise we need to treat our selfs, I think I tell them what I need now, lol


graham100
3 years ago

Going to see mine tomorrow. To tell her I need a steroid boost before my holiday. Great fun isn’t it. Not.


julia44
3 years ago

another holiday graham100 thought you just had 1 lol


graham100
3 years ago

Haha Julia44, that was a break. July is the holiday, 6 of us going. The island has just emailed my friend to tell him they have built a buggy to get me across the sand, special wheels from America and they are having the cushions made now. Will be ready when we arrive. Lol we can’t wait to see what it looks like. Hoping something out of mad max. Lol.

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