MS Pain relief

[MorayC]

Hi my name is Moray and I have had Ms for 10 years as I was misdiagnosed, and since being diagnosed three years ago with MS, I have been given many forms of drugs, none have helped since the side effects were awful, Copaxone injections, Painkillers, Antidepressant's. At the moment I am taking nothing as the doctors don't seem to know how to help anymore. I am disabled and rely on 24 hour care and in constant pain and very depressed. I rely on my partner for everything including help on the computer as my hands and arms are numb and painful, #I even find it difficult to use my mobile.

 

I don't know where to turn anymore and am so depressed and in pain, Can anybody help or advise.

I am a very positive person and have fought cancer but this has me beaten.

 

Blessings

Moray

[Nick]

Hi Moray,

 

Welcome to the forum, and so sorry to hear about your problems. It's pretty quiet on here at the moment but this is a really good site with some very knowledgeable people out there only too willing to help. I take pregabalin for pain and Citalopram to help with depression. The most help I get is via my MS Nurse rather than the GP who is simply to busy to even start to understand the complications of MS. I wonder if you have been referred to an MS Nurse? I think the other thing that has helped me most is having support from other people who have MS. Finding a local group can be helpful but can also be a bit daunting. The site here is a kind of on-line version of people with similar problems supporting each other and it does work.........all thanks to Marina who did all the hard work.

Anyway I hope somebody else will be along soon to give you a bit more help

 

Nick

[MorayC]

Hi Nick

 

Thank you so much for getting back to me, you have been a great help,. I haven't tried the medication you suggest, are there any nasty side effects as all the medication I have taken so far have either made me feel like I'm on another planet, sick or drowsy amongst other things. I do have an MS nurse and neurologist I see every six months and like you my GP isn't much help. I live in a rural location miles from the hospital and town, so the only support I have is from my partner who is a saint putting up with me.

I've always been a very active independent bubbly positive person and miss the person I used to be before the MS brought me down. So my only link and support at the moment is this forum.

So thank you so much for getting in touch.

 

Blessings

 

Moray

[Marina]

Hi Moray and welcome from me too

 

Pain in MS can be a complicated affair as there are various types of pain, such as neuropathic pain (numbness, pins & needles, tingling, etc) spasms, trigeminal neuralgia ( TN), musculoskeletal pain (often as a result of poor posture due to other MS symptoms) and so on.

 

Sometimes we have to take several drugs to try to treat the various pains, and some drugs may treat more than one type of pain.

 

Antidepressants, such as Amitriptyline, are often prescribed and help quite a few people.

 

For spasms, drugs such as Baclofen are frequently given. These tend to be muscle relaxing drugs.

 

For neuropathic pain, drugs such as Gabapentin, Pregabalin, Clonazepam are given. Tegretol, more commonly used for TN can help with neuropathic pain too.

 

Botox is sometimes given too, for severe cases of spasms and bladder symptoms.

 

Baclofen is usually in tablet form, but there's also an "Intrathecal" pump that is surgically placed under skin.

 

And there's cannabis - https://www.mstrust.org.uk/a-z/cannabis. Sativex is a cannabis-derived drug, but is as good as impossible to get on the NHS now and is hugely expensive otherwise. Some MSers have found CBD oil (cannabis extract with high CBD and low or no THC) to be very helpful and can be bought online, but it can be a minefield trying to find a good one which is any good and isn't snake oil - one problem with CBD, though, is that the MHRA are threatening to make it require a medicinal licence by the end of this month....

 

Some people have found CBT or mindfulness useful in helping them cope with pain.

 

Others find that magnesium can help with spasms.

 

I haven't listed every drug or treatment in every group, and I may well have forgotten some others - if so, someone else might come along and mention them.

 

Unfortunately, all drugs come with potential side-effects, the key word being "potential" as not everybody gets side-effects or they wear off after some time. Some drugs might have fewer side-effects - for instance, Pregabalin is a form of Gabapentin but with fewer side-effects. Some MSers decide they'd rather put up with some of the lesser side-effects if the drug helps.

 

Everybody's different in how they react to these drugs too. It can sometimes need a lot of trying out various ones to find one that helps best for you.

 

I really do hope you might be able to find something that might at least help a little bit, even if only to take the edge of the worst of it for you

[Nick]

Moray,

 

Like you, I had great difficulty in going from being very active and in employment, to a new situation, very different from the old me. Again having a partner who can take the strain is so very important. In my case it was my wife Kay who took that on. The big problem is that MS seems so different for different people, but one aspect is the depression side which is often under estimated. Finding a balance and making a positive approach is very very difficult BUT is possible. Getting that right can help the other problems. Sometimes you have to give up those worries and allow others to help.

 

Nick

[MorayC]

Hi Marina and Nick

 

I am replying to you both in this as I am not sure how to reply individually to each person, hope that is ok.

 

 

Thank you both, you have been very helpful. The reason I ask about side effects is because I have been trying so many and up to now the side effects have been worse then the MS. I had no choice when I had cancer as the drugs saved my life but I am still suffering the side effects years down the line.

Having help and advice from other MS sufferers is helping me immensely.

 

My partner is an aromatherapist and we use a lot of natural oils which help, we lead a very active life as practising druids, my problem is constantly battling the pain and fatigue and I get very frustrated and depressed as my body lets me down.

 

Blessings to you both

 

Moray

[Nick]

I'm interested in writing bits and bobs about my own experiences of living with SPMS and think you may be interested in this old bit I did for the forum here.

 

Thinking in a different way is one method of getting away from our 'normal' thoughts and flexing our brains in new ways. I have been interested in these kind of things long before the arrival of my own MS. So I was surprised to be able to use these abilities, helping me adjust in the way I now needed to think. One of the areas I had read a little on and was already intrigued by was some very old Buddhist thinking. Clearly not from any of our western ways.

 

One of interest describes the 'four noble truths'. These are, Truth of suffering, Accumulation of suffering, Elimination of suffering, Path that leads away from suffering. The last part sounds good, and understanding that is the interesting bit.

 

1) The true of suffering says simply that 'Life is suffering': You need to take that first statement on board as a hard fact. In other words accept your MS ....accept life! Life is all pain with or without MS! Simple! The demon is real ..........Life's a pain and then you die..in that modern cynical jargon we sometimes use.

 

2) The origin of suffering lies in all the cravings of life. As an example we crave for many things we can no longer do since we had our MS, hence we 'suffer'..... part of that is in the way we think.

 

3) The Elimination of that is to get away from those cravings... In other words have a better understanding of our own MS and work with it not against it. This is 'it,' It just a'int going to go away, so live with it, and stop grumbling. This is the real monster. ...................Not some fluffy toy!

 

Which leads away from that suffering. The 4th truth, quoted as..................

 

Right view, right intention, right speech, right action, right livelihood, right effort right mindfulness and right concentration.

 

A clear and precise way of thinking which many of us who are learning to cope with MS will recognize as true. It makes the most of our situation, that being my whole point. My own MS monster, (I'l call him 'Old Shuck' An old East Anglian phantom dog) has to be accepted as factual right from the start rather than as some modern day myth. He is that token, that need. Understanding this becomes an excellent way to progress with regard to the difficult and complex issues we all face with our MS . Trying to convey these thoughts in a clear and simple fashion without confusing the issues is also extremely difficult and I hope you may find them useful. By the way when I am struggling with my own MS my real mantra is simply to remember 'life is suffering' .....

[Skippysprite]

Hi Moray

 

Welcome to the forum, I am so sorry you are not so good at the moment. I have neuropathic pain, and for this I take amitriptyline, but had to start on a very low dose, and increase it very gradual. This way I have found no side effects, which for me is good, as I don't seem to tolerate medication very well.

 

I also take Baclofen to help with spasms and stiffness, and again, started very low and increased very slowly, and whilst they do not stop it totally, they certainly take the edge off.

 

I appreciate we are all different how ms affects us, but it may we worth having a chat about these with your ms nurse. I also took part in CBT treatment as was very depressed with it all, and that helped also. I was introduced to mindfulness from physotherapist, and whilst I struggle with it, I do try.

 

Hope this helps, thinking of you (((hugs)))

 

Pam x

 

[MorayC]

Bless you Nick.

 

we think alike, my spiritual path I follow as a qualified Angel Therapist helps me normally control pain through meditation, I've always been a believer in controlling the pain and illness not letting it control me and always helped others with theirs. In my circle I am well known for the work I do but I realise I am still only human and the cancer took all my strength to overcome as it was a very traumatic time. So I am not keen on taking addictive medications only life saving drugs where I had no choice but to take. By communicating with other MS suffers on this forum it is helping me immensely as I had limited knowledge about MS.

 

Thank you all so much for your help and experience's and I enjoy receiving your replies.

 

Blessings

 

Moray

[MorayC]

Hi Pam,

 

Thank you so much, I also take amitriptyline at night my MS nurse is very helpful to. I think because I have so much more to do in this life's journey and the pain and the exhaustion drags me down so that I get frustrated as I like to be active and creative which is my way of coping.

 

Thank you for your support and lovely message.

 

Blessings and {{{hugs}}}

 

Moray

[Gosport Nancy]

I found this thread while searching for 'mindfulness'

 

I started studying mindfulness early last year and found it helpful for easing chronic pain and for addressing stress in my life

 

So...I googled 'mindfulness and Multiple Sclerosis and found this link

 

https://www.mstrust.org.uk/a-z/mindfulness

[Nick]

It's best to use your own 'resources' rather than take instruction in a  'mindfulness course'  that is, if you are able. I say this because the process is all about increasing your own understanding of how to handle your own situation. It 'bootstraps' up your own 'defence'  something that is really a very personal thing.   I wrote the following on this sometime ago.

 

Gumption Traps

 

Gumption’s great! lots of folk have loads of it,some have none.

Its essential, it’s something  money can’t buy and it’s immensely valuable.

The word gumption is Scottish. I think its a lovely word. It sounds kind of old fashioned and has none of the feelings associated with our modern hectic world.

  If you look it up in the dictionary it gives a meaning:  “Drive and Initiative”. I think those words sound a little wrong, Its more akin to “common sense”.  I myself prefer to use that good old original word, Gumption.

You don’t just automatically have this stuff . Gumption is like a reservoir.  You start off with a little and by playing your cards right you may gain a little bit more. Once you are all topped up with gumption  you can  tick along quite nicely.

I should say at this point  that  I must be the worlds leading expert in just how NOT to build up  “gumption reserve”, that is, I’m an expert on “gumption traps”

Over the years Kay and I completely rebuilt our own home. I am not a builder and have always prided myself on an ability to have “drive and initiative”. I  thought I could easily  turn my hand to just about anything.  You could call that “Gumption”. With me it was better described as being “to big for my boots”. (As Carol now constantly reminds me, “Well your a man!”, as if I needed reminding! )

Over the years, working on the house  I have fallen countless times into many gumption traps.  Moments of total despair!  quite the opposite of what I really needed.

For example years ago when I first started I thought the art of wallpapering was hereditary!  As children it was always my mum who seemed so effortlessly to throw wallpaper at a wall and in the twinkling of an eye end up with a first class professional look. It had never crossed my mind that you actually had to learn to wallpaper!

I threw myself at the job. I can see that glossy brochure even now and just how much I believed that with a couple of hours work I too would be able to impress all my friends.

  You can imagine the result!  It was an expensive paper. I wasted loads.  What’s worse  the finished job looked absolutely terrible.

That’s the gumption trap. It’s that moment when you hurl your new laptop computer in despair off the top of the nearest high cliff. Or when constructing flatpack furniture you follow everything in the instructions to the very letter. Only to find  right at the end that not only have you constructed it incorrectly, but you are now going to have to start all over again! It’s that terrible moment of Grrrrrrrrr!       This is defiantly not very good for you!

A ship’s engineer I used to work with was a master of the proper art of gumption.   Like everyone he too always ran into problems . Unlike many of us he simply stopped , had a cup of tea and more importantly a think.  We all make mistakes. He however had this canny way , by stopping and working on a solution in his mind of coming up with a plan.  An almost miraculous way of effortlessly fixing things. He was never cross never rushed , just plodding along sorting things out.  Fantastic!

Sound familiar ? Well having meet many of you I now realize you  seem to have excellent levels of this gumption. I know it’s a case of having too yet it would be interesting to learn just how you acquired it. It’s very impressive and even after I discovered my own MS I suspect I am still getting more Grrrrrrrrr’s than many of you.

With MS  the “Drive and Initiative” required  is of a special type.  For a start it’s best stated the other way around. Initiative and drive. The Initiative is the development of an understanding on how to work with your MS.  The drive is most certainly not the corporate type!  No this drive means being able to “not give up”,  I think “pace” might be a better description.   Yes indeed a  special type of common sense.

Perhaps some of you with experience  would like to give training course’s in Gumption!

We could all become Gumptionologist,s!  Its defiantly an essential tool for  handling MS.  It’s noticeable that its not something that gets “prescribed” or “described” by any of the  professionals ! Its also interesting to realize that an “attitude” would appear to help control this neurological condition.

 

[Gosport Nancy]

Hi Nick ...you posted "It's best to use your own 'resources' rather than take instruction in a  'mindfulness course'  that is, if you are able. I say this because the process is all about increasing your own understanding of how to handle your own situation."

 

The practice of mindfulness is well established and proven helpful to people with MS and my tutors tick all the boxes for me to work with them. Mindfulness has taught me how to recognise my resources and accept my limitations so that I can find my own workaround. I am happy that other people have found something that has worked for them though...so all is good.

[Nick]

That's great! 

 

I probably put things slightly wrong, if you know what I mean.  Its great however you do it!  Long before I had MS I was reading a lot of stuff about how we think and how we work, so I might have had a head start.  I certainly couldn't be without the help of thinking in a particular way now that I have to put up with the dreaded!!  In many ways it has proved a more powerful assistant than some of the various prescription drugs I take.

 

Nick 

[Gosport Nancy]

Hi Nick

 

I hold with the idea that we all have to find out own way forward. For me it has been mainly the psychological route since changing our way of thinking while choosing to respond to situations rather than react are things that I find helpful. So, like you, I have found pacing myself helps me get more done. Avoiding the downward spiral of rumination on things I can't change has helped a lot to.

 

I'm happy to explore a wide range of tools that might help and I am still learning :)

[Nick]

I liken MS to somebody on a metaphorical high wire,  sometimes they manage to walk along the wire, yet they always know what it's like to fall off. Sometimes they wobble and the only thing that might stop the wobble is calm control of the mind. Sometimes they fall, as there's nothing they could do to stop that wobble, Yet there is only the wire, so they get up, bruised and battered and climb back up to the wire, and start agin.  

Knowing the wobble(MS) is useful. Understanding the wire (life) is useful. Knowing yourself is useful. 

When first diagnosed I tore myself apart, mentally, as I struggled to face what seemed like slammed door, after slammed door.  No-one seemed interested in my losing a job, a lifetime's career, gone up in a puff of smoke.  Not eligible for  most benefits and lots of other good stuff!  Let alone understanding my own, new to me, MS!

 Of course the problem was I had failed to differentiate all that irrelevant stuff from what was relevant which simply made things worse, much worse.  Getting back up, bruised and battered that first time was the most difficult thing. Discovering that life still goes on, with or without you, and learning how to take the first step back onto that very high wire was difficult. Then finding that the first thing that happens on your personal, metaphorical, high wire is that it wobbles, a lot, and you don't understand this new situation, so, guess what you fall off!  I'm still working on it ten years down the line and these days I'm a pretty good metaphorical tight rope artist and know a lot about falls. 

The progression of MS for most people with MS is an unknown quantity. It is unique to you. Your difficulties may be similar to mine, yet the impact over time may be completely different.   I've read a lot about MS, I've talked to a lot of neurologists, MS Nurses, and physiotherapists,  Yet despite all that and the prescription drugs I take, the most useful thing in the world is knowing others who face the same uncertain future.

 

 

Edited 19 Jul 2018, 7:00 pm by Nick

[Gosport Nancy]

I totally get the wobble and the wire which you wrote about so well

 

I decided that I needed to sort my health out some other way the day I came out of the office of the Neurologist back in the 90's. He told me he didn't want me sent for further investigations because all my symptoms were psychosomatic. As I left the office the friend who came along with me said that this was a good result as we knew then that there was nothing seriously wrong with me.

 

I haven't seen any specialists about M.S. since. When I researched what meds were available I felt that I didn't want to have the side effects along with the M.S. My feeling now is that a diagnosis would really only be helpful to the DWP in making a PIP decision and frankly I would rather not spend any time on the search for a diagnosis right now. I have thought about it but I am a carer and want to spend as much time with my husband as I can while he is still here. 

[Nick]

Its a very difficult position for you and hard to give direct advice. 

Any diagnosis is, at the end of the day, simply a label.  It may reassure you, that there is confirmation that, 'something is wrong' and yet that is all it tells you.  This is particularly  true when it comes to neurological conditions.  As you have seen you are not alone when it comes to difficulty in establishing any kind of firm diagnosis, which often takes a very long time.   My own situation was different, I had a swift and firm diagnosis.  Yet this was only helpful in the fact that it confirmed something was wrong. It told me nothing else about  my specific situation.  This is a dangerous time! On the one hand you desperately want to find a 'cure'  on the other you may need to show others that you really do have a problem (justification)  All this baggage tends to obscure what you really should be doing , which is learning about your own problems and finding solutions on the best way to live with it, rather that against it. 

PIP is a completely different matter.  The political decision to take a particular view on disability was taken some years ago and has been implemented by the various different parties over that time.  The implementation revolves around a semi-automated system of point scoring.  This is completely different from the old DLA way of doing things.  To be overly generous, you could say this was designed to weed out bogus claims. Yet the statistics don't  agree as there was in fact very little fraud in the old system.  The conclusion from many people, including myself is that government cut backs saw the 'soft target' of disability hit with these changes.

The present situation is what we are dealing with, something again which is difficult to accept, something we may start worrying about! How can you not feel perturbed by something so important, so unjust?  That's a bit like worrying about our own health, not knowing which way to turn. Again this is something that SHOULD be placed in the background, as your number one priority is your health. If your health is being affected by the worry of PIP you need to see things "as they are"  not "how they should be"  A tough call but good thinking here will improve your situation.

 

On a lighter note, don't think I have the answers,  I'm an expert in falling down the same holes, and I am dreading any forthcoming battles with the DWP.

 

Hope that helps 

 

Nick 

Edited 20 Jul 2018, 9:28 am by Nick

[Gosport Nancy]

I have been treating my symptoms as they come up since they first became problematic in the early 90's so I see myself as an old hand at this.

 

I have settled into a routine of alternative therapies that I have found work for me. The research I have done has included reading up on double blind and randomised studies and also USA based sites as people in the USA have access to alternative therapies on prescription that are currently unavailable here in the UK.

 

So far as PIP is concerned, I have decided that this current claim will be my last one. As you wrote, it is better to accept that things are as they are rather than focussing on how I would have liked it to be.

[Nick]

Some of the leading research into MS is done here in the UK.  I was involved into a world wide, two and a half year study into the drug Natatizumab in the use of secondary progressive MS.  

I have a rather conservative view of alternate medicine but feel there is a positive outlook from the professionals, who already have a much better understanding of MS than they did ten years ago. Good for us, but don't wait up, it could still take a few years yet to get more effective drugs.

The trail I was involved in was simply abandoned, the outcome being inconclusive.  In the meantime, every year, you will read about miracle cures for MS all of which have been untrue.  

We live in hope

 

Nick 

[Gosport Nancy]

My positive view of alternative experience comes from being able to treat systems where conventional medicine has failed me.

 

The latest example for me is that I wasn't offered any conventional treatment for heart failure until 15 months after my cardiac arrest and stay in ICU while in a coma.

 

The diuretics and ace inhibitors had so many unacceptable side effects that I decided to stop both and up my dosage of Co=Enzyme Q10  This is an alternative treatment that is routinely used to treat heart failure in the USA, available there on prescription and covered by medical insurance.

 

My blood pressure has now been stable for more than 6 months and I no longer need medical treatment nor need to see a cardiologist.

 

The same treatment is recommended  after trials have shown the benefits to treat fatigue and depression in people with MS. I won't be holding my breath while new conventional treatment is tested as diuretics and ace inhibitors were tested , as was thalidomide. 

[Nick]

The main thing is, if it works for you, that is all that matters.  

Without doubt the history of drug testing has seen many unexpected consequences.  All drugs are dangerous to take, just look at the long lists of do's and don'ts that comes with them!  However I would not be so dismissive of the procedures that go into getting new drugs onto the market.  The companies spend a fortune on drugs that may never make it.  The expert analysis and the volunteers who undertake a single drugs test take immense scientific caution, and risk to come up with something that is better than before.  Often they fail to make it through the different stages, even when it has passed scrutiny the standards of  governing bodes may not allow it.  Here the differences between EU and UK law may be different to the USA making drugs available under one administration and not another. Something you mention. This is very pertinent to MS drugs here in the UK.  A recent prime example being Sativex.  considered not cost effective, yet some people with MS consider this a useful drug 

Do not offer Sativex to treat spasticity in people with MS because it is not a cost effective treatment.

WWW. NICE.ORG.UK

 

[Gosport Nancy]

What bothers me about what is available here in the UK that might help me is firstly the time taken to get treatments to market and secondly the dismissive attitude of some medical personnel towards patients who prefer to use what they have found works. 

 

While I was laying on a trolley in a hospital corridor for more than 18 hours with untreated multiple organ failure, staff told my husband that they thought I was a hypochondriac when he told them what alternative treatments I used. 

 

I'm currently seeking legal advice so I can't name hospitals here