Category: Spinal cord stimulator

Tuned Up and About to Charge the Battery – the Pain Clinic

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, Invisible illness, Pain relief, Spinal cord stimulator4 Comments

So I made it to the pain clinic in one piece – just!  The body work did its utmost to stop me and it was probably the furthest that I have travelled in my motability chariot (in time – it was rush hour travelling into London, you understand!) – so our arrival at St Thomas’ was surrounded by a cacophony of feelings in back, hips and thighs, with the right hip spluttering the loudest.

Fortunately parking is never an issue because the carpark is so blooming expensive – but, any blue badge pals out there – did you know that at St Thomas’ you are able to park for free if you show your appointment letter and you actual blue badge to PALS.  At Guys you can also park for free in the NCP carpark along the road by presenting your letter, NCP ticket and blue badge to security before you leave.  Might have saved someone a small fortune there!  What was an issue was getting into a lift from the basement to the ground floor – I mean, come on people, I am not sitting a wheelchair because I am feeling a bit tired.  I can’t actually climb the stairs!!

Tuned Up

The engine revived with caffeine and banana, we checked in to the pain clinic which faces directly opposite Big Ben and the Houses of Parliament – currently shrouded in scaffold.  I always forget just what a wind tunnel is created along this stretch of the Thames and Wednesday morning was no exception – good job I was using my wheels because the icy gusts would have tackled me easily.  As predicted the CNS was surprised and concerned when she saw me, but once I reassured her that the bodywork changes before her are down to the dreaded stretchy body parts, she went about checking the pain levels.  I am pleased to report that once her little box of tricks “spoke” to my implanted little box of “tricks”, it was established that my switching on and off, general usage of the stimulator and recharging is all scoring full marks! Hurray.

Next the tricky part.  Any chance of a retune?  This was no problem and the external box turned off and then turned back on the internal box…..jump starting the battery back to life and automatically altering the sensation.  The biggest difference is the feeling in the sole of my foot – it is difficult to describe, but the electrical pulses feel more rapid and “wider”.  The pathway of the pain through my foot is so specific that I could draw it for you to see, so the area that needs to be covered by the neurostimulation is very specific and so very specific electrodes in the lead on the spinal cord need to be active.  But how about getting some of that lovely electrical stimulation that knocks out the way my dodgy wiring sends perceived pain to my nerve centre – my brain – into my right hip and thigh??

Of course the proper response is that nothing can be altered for pains that haven’t been investigated – it wouldn’t be good to mask pain that is due to injury or a new illness.  But of course in this case one bendy chassis is causing wear and tear on the bearings and axles, putting the tracking off massively.  The biggest concern had to be keeping the pain coverage in my right side to the same level – it would be awful to lose the fantastic coverage i have.  But with a little tweaking she managed to give me a little sensation in my hip and if I lean back into the chair (or better still lie down onto the electrodes) the strength of the stimulation increases.  It doesn’t get rid of the pain or even mask it in the same way that it masks the nerve pain, but any little bit of relief this rust bucket will take!

So the bodywork may not have been replaced by a shiny, sleek sports model, but with a bit of fine tuning it is slightly more comfortable.  (BTW the beach buggy above was Dunc’s first car, and whilst sparkly, not very comfortable!). Thanks for all the good wishes – really appreciated.  Now I’m off to recharge my battery for a new week…..and in this case I assure you I am being literal, not metaphorical.  Should take me a couple of hours to complete!IMG_0817

(BTW: any St Thomas’ pain/input patients out there – the booking system was changed last year and the nurses are no longer allowed to book our appointments.  But since central bookings has taken over, quite a few of us have slipped through the net – hence why I had no appointment last year.  If you have a problem call them or email the nurses at their catchy new address:

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One Rusty Old Body In Need of a Tune Up! Trip to the Pain Clinic

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, Ehlers Danlos Syndrome, Spinal cord stimulator30 Comments

Tomorrow I go back to St Thomas’ hospital, London to the Pain clinic and it struck me that this is where my new life as a blogger began.  Three years ago I was first seen in the Pain clinic for the start of physical and psychological interviews to assess my suitability for a spinal cord stimulator trial.  Just over two years ago I became the recipient of an implant.  So much has changed in this time.

The last time that I was seen – approx 20 months ago – I walked into the clinic and was able to report that the scs had made a huge difference to my pain but we made a decision not to try to link it in to my neuropathic bladder damage.  Tomorrow the clinical nurse specialists might be surprised to see me enter in my wheelchair, albeit a smart burgundy number, rather than on my sparkly walking stick. File_000 They might be shocked to learn that my autonomic nervous system has become increasingly worse since the implant onto my spinal cord – merely coincidence, I couldn’t really say – causing me to regularly have severe dizzy spells, faints and difficulty controlling my body temperature.  I did dislocate several joints whilst I was on the residential 2 week pain course so this wouldn’t be new, but the fact that my right shoulder is out of place more than it is in and the faints generally knock a few body parts out of alignment might raise eyebrows.

All in all I think we can safely conclude that the body is behaving more like that of an eighty something, rather than a forty something (no, my own kids….I have not yet hit half a century!).  So it feels like time for a tune up……last week it was the cardiologist – heart still ticking, although the pipework could be in better nick!  Saggy vessels were the delicate descriptors for the network carrying the blood of yours truly.  Yesterday it was the turn of a new consultant – the upper gastro intestinal – to cast an eye upon this beauty.  She deemed a camera necessary to check out the fuel pipes and investigate the pains and possible paralysis of the stomach. Something to look forward to.  Next week there is a trip to the bone man – yes Mr Orthopaedic Shoulder Specialist is going to look at the dodgy joints, check the scan which will show a classic dislocation and hopefully come up with a solution to glue the arm permanently in place and all with minimum pain.  I think there may be a visit to the rheumatologist on the cards sometime soon, but don’t want to be greedy.

Rusty body

So tomorrow I hope that I can have a tune up – maybe the frequency and bandwave of the stimulation increased and widened to cover my right hip and leg too.  At the moment it covers the chronic, constant nerve pain in my back, left leg and foot – the result of nerve root damage in the lumbar spine.  The pain in my hips is different and is caused by a mix of arthritis, recurrent dislocations and stretched ligaments/soft tissue.   But the whole host of chronic pain types are all as a result of my Ehlers Danlos Syndrome, literally a pain in the neck that has gradually overtaken life, but no use whinging as my kids remind me daily!  So when the nurses express surprise to see me so altered,  it won’t be because the scs isn’t working – would I have it done again?  In a heartbeat as it has given me  a way to manage some of the pain.

But I am hoping that with their little box of tricks, that looks very like a mechanics electronics box for tuning a modern car, the nurse might be able to switch on a couple more electrodes, alter the band width, tune in some good music and drown out some of this other bl**dy pain.  They might not be able to get rid of the rust, but will report back when I am wired for sound!

Chronic pain, opiates…& where does that leave me? (Part 2)

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, Ehlers Danlos Syndrome, Invisible illness, opiates, Pain relief, Spinal cord stimulator5 Comments

continuing from yesterday’s republished post, this is the follow up written at the time with a few additions and adjustments for today…..

So where does this leave me?  I am the person sitting in that seat desperately in need of help.  This “me” refers to all of us experiencing chronic pain whatever the reason – pain that has lasted for longer than 12 weeks – 6 months depending upon who you read!

From that first visit to our general practitioner to the physio to the surgeon, it can feel like everyone is giving conflicting advice.  I don’t blame the GPs for starting so many of us on opiates.  When the gabapentin or lyrica isn’t sufficient, and the amitryptilline doesn’t touch the sides, there isn’t much else left to turn to when this desperate individual is begging for help. images (20) In the same way, how many of us have surgery out of desperation?  I am sure that the neurosurgeon who performed my first fusion really didn’t know what else to do with this weeping woman on his consulting room floor, declaring she couldn’t take any more!  I don’t think that anyone takes these drugs lightly as the side effects can be so debilitating and vary from person to person.  The consultant from my last job prescribed my first cocktail and I never dreamt that I would be taking them for so long or quite how they would affect me.

We’re prescribed tramadol, sevredol, oromorph, MST, oxynorm/contin, and at first there is usually some relief.  For me the drugs never completely masked the pain and the dose of pregabalin was soon topping the scale and the oxynorm started creeping upwards soon to be replaced with the long acting variety.  I smile now when I think how at work the “control” drugs are kept in double locked cupboards and yet my bottle of oxynorm was stuck on the kitchen window sill to take a quick swig when the pain became too much.  My GP never tried to limit amounts and gradually increased the dose over the years.  I had also been prescribed mirtazepine to take at night – another antidepressant drug prescribed by my old consultant.  The side effects were horrendous.  I tossed and turned all night yet was unable to function the next morning to the extent that I knew the kids were in the room, but I couldn’t open my eyes.  Eventually I weaned myself off. But at my very first appointment at St Thomas’ Dr P took one look at my meds and informed me that the opiates would have to be reduced.  Yes, he did explain why with the reasons from part 1, but I think that everything that came after was a blank.  There is a feeling of panic – how on earth will I cope with less than I am taking?  This isn’t even working!  A fear deep in the pit of your stomach as the realisation that you may be forced to try to tolerate higher levels of pain hits home.images (21)

St Thomas’ hospital, London, policy for patients on the spinal cord stimulator programme is that you should not be taking any liquid or injectables; breakthrough doses should be weaned right down before the trial; and high doses of long acting opiates should be weaned down (MST & oxycontin).  I don’t know why different hospitals have different policies.  In my experience over the years consultant preference has always played a huge role in this type of policy.  I have no idea how other countries deal with this issue, but I do know that the USA carry out a huge number of  nerve transmitter inplants each year.  We all have different pain and maybe a one policy fits all is not the right way to go.  Within our group a lady barrister had a chronic bladder problem (interstitial cystitis – for further information have a look at this great blog: Bladder Help) which left her with constant raw areas on the bladder wall.  Her pain had very specific flares resulting in a trip to A&E approx monthly and pethidine injections until the flare subsides.  She was unable to imagine how she could possibly cope during these times of crises.  For further information on bladder related problems visit Layla’s http://bladder-help.com/

Telling us that we must cut back is the easy part. Doing it is somewhat trickier.  There will be several people on SCS facebook support groups at any one time who are currently struggling as the pain spirals up as the drugs go down.  It is tough on nearest and dearest too.  Every time that I have lost the plot in recent weeks, my daughter looks knowingly at the rest of the family and mouths “drugs” – even when she deserves to be yelled at!  So is there a simple answer?  I guess the obvious would be not to prescribe opiates in the first place, but until a suitable alternative becomes available, I don’t believe this will happen any time soon.  So meanwhile, we dependents will have to ask you friends, carers and medics to bare with us as we attempt to wean down our dosage, to offer love, support and most importantly, please don’t judge when the going gets tough, as it certainly will.

Update 2017:  I was still taking oxycontin when I had my scs trial and the permanent implant, although I had managed to reduce the dose.  Over the following months, with huge support from my GP, I continued the process of weaning down my dosage – afterall one of the reasons for having the implant was to be free of drugs.  Bloody mindedness stepped in and I came down the doses considerably quicker than my GP wanted me to, but be under no illusion, it was not easy.  Upset stomach and cramps (for someone with EDS gut issues normally), sweating (additional to POTS symptoms), concentrations issues, insomnia (worse than previously) and more.  I met up with several friends I mad on the pain course last summer, and whilst we had all had different experiences with the scs, we were all agreed that we felt better since ceasing opiates.  We still have chronic pain.  But we have found that we have better nights (remember I can’t have my scs switched on at night so have no relief for my nerve pain) – not necessarily sleeping more, but better quality sleep – and the feeling of being oneself again.

For me a noticeable difference has been an increase in the pain associated with my Ehlers Danlos syndrome in my joints and soft tissues since stopping the oxycontin.  I believe that the opiate was masking my deteriorating condition and I am now having to learn to manage this without resorting to strong opiates again.  On bad days it would be very easy to open those bottles of oxynorm again!  download (1)Funnily enough I actually find that weak opiate based drugs, such as codeine phosphate/paracetamol mixes, give me more side effects causing me to reach for alternatives first (heat, gentle movements, gels etc etc). On the bad days……! The spinal cord stimulator has definitely given me control over the chronic pain in my back and leg caused by nerve root damage – I can go as far as to say that I would be unable to manage life without it.  But I am not drug free – I remain on the highest dose of pregablin/lyrica – and it currently is unable to provide any relief for my other chronic pain.

I plan to cover some of the more recent innovations in neuromodulation and also pregabalin?Lyrica – please send me your thoughts or suggestions!

 

3 OF THE BEST CHRONIC PAIN SUPPORT WEBSITES IN THE UK…from Barbara at Back Pain Blog UK

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, Spinal cord stimulatorLeave a comment

Having suffered with chronic pain for many years, I know first hand that at times it can feel like there is little support out there for sufferers.  It was after using some of these websites myself, that I was inspired to start writing Pain Pals, to document my journey as I had my spinal cord stimulator trial for the chronic pain due to nerve root damage in my back.  My underlying chronic illness, Ehlers Danlos syndrome, has caused me even further deterioration and pain……meaning that I continue to look for support in day to day life.

This blog post from Barbara details some great sites that might be able to offer you or a loved one pain support:

My first choice has to be A Way With Pain – I was first introduced to this site back in 2013 after seeing an article on Julia Kelly a chronic pain sufferer, and founder of the charity A Way With Pain . In her Father’s words about Julia’s chronic pain,” Whilst the levels of pain and financial pressures have not changed, her positivity, self- confidence, and self- esteem are slowly returning. …..

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To read the full post visit :Back Pain Blog UK

A Chronic Comparison?

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, Disability, Ehlers Danlos Syndrome, POTS, Spinal cord stimulator14 Comments

I’ve had this post roaming around my mind for a couple of weeks now, and finally put pen to paper…or rather put the finger splints on and attacked the keyboard.

Last week I took part in an on line research forum into chronic lower back pain.  Due to confidentiality clauses I can’t tell you any details, but a group of us were required to spend at least an hour each day answering a series of questions, or giving our thoughts and feelings about our conditions.  We were also encouraged to comment on each other’s posts and interact as on any forum.  The week before Duncan and I went to an EDS support group, where we were joined by about 20 others and asked to think about our coping strategies for different aspects of the illness.  The final trigger was a tv programme featuring my chronic condition, Ehlers Danlos Syndrome.ch7jwb_weaaooad

So I feel that I’ve spent a lot of time recently reflecting on my various conditions and revisiting my “journey” – don’t you just hate that expression, very X Factor or Strictly Come Dancing!  It was suggested for the forum that we plot a picture of our individual pain journeys, and I was surprised at just how long it took me to do this and how much was on it.  Of course, I needed to go back to childhood as when I looked back I cannot remember a time of being without pain, but as a child and teen I assumed that everyone else felt the same way.  file_000-9

I know that it isn’t particularly clear but this is my “map” detailing the EDS and the original back injury and subsequent chronic back pain.  Those of us drawing these maps all had very different backgrounds & experiences, and I was really inspired and moved by some of the other stories. I started to become aware that some people were being put off the idea of certain treatments (eg surgery) because of the negative experience of others.

The support group was a night out for us the previous week, and we even managed a meal before.  It is good meeting with others in similar positions and it is always great to welcome new people who attend, particularly as we are a very new group. We were able to come away with some advice for dealing with extremely anxious teens – there is a lot of literature out there now that recognises a direct link between anxiety  and EDS.  I must admit though, that I do feel a little conflicted sometimes in these group situations – the support on offer can be fantastic, but it can also be tricky taking on board a line of treatment/therapy that someone else swears by that either hasn’t or may not work for you.  When another person has gone on, for instance, a special diet and all their symptoms have gone into remission giving them a new lease of life…..I used to see this when I was working in palliative care and patients would wonder if  they hadn’t tried hard enough with a particular diet or vitamin regime, that it was their own fault that they hadn’t halted their illness when this had cured Mr X.

I wonder if it is just human nature to compare ourselves to others, in sickness and in health as the saying goes. But just how infuriating is it when some well meaning person tells you about the wonderful remedy that Auntie Ethel has just used with great success for her back pain/migraines/or even a serious illness cure?  Do you not want to scream out “Do you really think that I haven’t tried?” because I know that I do!  But of course I don’t…..

When these comparisons happen, be it ourselves or others making them,  I wonder if there can be a thin line between support and competition.  I do realise that this probably sounds awful as no one who is chronically ill wants to compete with anyone else over symptoms.  But with some of the multi system syndromes that we spoonies have, no two people will ever present in the same way and the list of ailments we have can be endless.  I have been reading facebook posts only this evening from frustrated people who find that their own families don’t believe their diagnosis because “cousin Freddy has that and he is much worse”.  I think that we all know that there are still medics out there who call into question the legitimacy of some syndromes and the severity of patient symptoms.

Just because a certain operation helped me doesn’t mean that it will help you;  just because you have found a particular drug fantastic doesn’t mean it will help me; just because my health regime allows me to walk for miles every day doesn’t mean that it will get you out of your wheelchair (it doesn’t BTW – I use my chair more and more!).  My back & leg pain and the treatment that I have had to undergo to find any relief is very different to the chronic EDS pain that I also suffer.  The only people who have really understood the former have been my group on the scs pain programme and those in neuromodualtion groups.  Yet whilst some people who have fantastic success with the stimulators have had a new lease of life,  I have actually deteriorated physically despite the stimulator being a success.

My deterioration is down to my EDS, escalation of POTS and an increase in my EDS pain.  Ironically the requirement to wean myself off the opiates in order to have the stimulator to reduce one type of pain, resulted in an increase in the other!  Many people who have had back problems would be amazed that even with the metal screws fusing my spine and the electrodes to control the pain, I can still hold a pretty good downwards facing dog yoga pose.  But of course my zebra friends know that this is actually down to being bendy and that sometimes being able to get into those strange positions is, for us, more dangerous than beneficial.

I am probably my own worst enemy when it comes to making comparisons and always feeling that I have little to complain about.  This happened when I watched the BBC DIY SOS which featured 18 year old Antonia who has Ehlers Danlos Syndrome and had been hospitalised for 3 years. 15831613-large The programme was great for highlighting EDS and this amazing young lady – I watched it twice and cried each time.  Of course I turned to my lovely teen girl and said “I feel guilty for making a fuss!” and whilst her brothers would probably have agreed with me, my lovely girl (now suffering her own dislocations, hand pain, anxiety, etc) told me off for thinking that way telling me “It is all relative”.  Out of the mouths of babes….

So what am I trying to say?  We are all individuals.  We will all experience a common cold differently (think man flu!!).  So for the many debilitating chronic syndromes out there, no two sufferers will experience the same symptoms, the same reactions to therapies or the same psychological impact as another.  I must allow myself to live with my condition in the best way that I can and for you to do the same – and somewhere along the way we can support each other and hope that the healthy world will do the same without expectation or judgement.

Pin for later:

A Chronic Comparison pin

 

 

 

Cloudy with a Chance of Pain

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, Pain relief, Spinal cord stimulatorLeave a comment

If you are anything like me this cold weather is causing you & your illness some serious grief!  My nerve pain has been off the chart today and the spinal cord stimulator has struggled to control it.

So…..If you live with chronic pain and haven’t already signed up for this easy research project, then please do……

https://cloudywithachanceofpain.com/blog/why-it-s-important-we-keep-studying-the-link-between-weather-and-pain

Review : Honey Colony Superior Cannabinoid Rich Hemp Formula for pain relief

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, Ehlers Danlos Syndrome, opiates, Pain relief, Review, Spinal cord stimulator5 Comments

Disclosure: “I have been given Honey Colony Superior Cannabinoid Rich Hemp Formula as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.”

 

For the last 6 weeks I have been trialing Superior Cannabinoid Rich Hemp Formula, an herbal supplement made by Honey Colony, a co-operative model based in USA that aims to empower the individual to be their own best health advocate. honey colony.com

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Cannabidiol (CBD) can be extracted from the cannabis plant and taken for health benefits, but without the euphoric feelings usually associated with cannabis/marijuana.  Honey Colony, who have a mission to empower the individual to be the best advocate for their own health whilst putting honesty back into the food supply, were looking for individuals experiencing chronic pain to assess the effects of CBD oil on their health and well being.

The science bit:

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   Hemp         ←                              →    Marijuana

Agricultural production                                                                          Pharmacological production

↓                   ↓                    ↓                                                                                 ↓                                      ↓

Fibre            Oil                Food                                                                          THC                               CBDs

Cannabis is made up of over 60 compounds, and the 2 in greatest numbers are CBD and THC.  The compound that people will be most aware of by reputation if not name is the THC – this is the part that causes the user to experience the high we think of in recreational use! However it is possible to produce a plant that has higher levels of CBD and lower levels of THC.  As CBD has no component to cause psychotropic changes it is useful for medicinal purposes. Must know facts about CBD

So now the health benefits:

Pharmacological reviews have claimed that CBD has the following properties

  • anti-sickness,
  • anticonvulsant,
  • antipsychotic,
  • anti-inflammatory,
  • anti-oxidant,
  • anti-cancer,
  • anti-depressant

(https://www.ncbi.nlm.nih.gov/pubmed/22625422)

Honey Colony has developed an herbal supplement incorporating CBD which they state

  • Balances the Nervous System
  • Balances the Musculo-Skeletal System
  • Promotes Mental Clarity, Focus & Memory
  • Supports Calm & Relaxation
  • Supports Healthy Immune & Stress Response
  • Supports Healthy Inflammatory Response
  • Provides Anti-Oxidant Support
  • Supports Healthy Energy & Stamina

 

What makes the Honey Colony Superior formula stand out?

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This herbal extract is a combination of CBD oil and 6 other natural compounds

  • Sichuan Teasel Root
  • Dang Shen Root
  • Astragalus Root
  • White Peony / Bai Shao Yao root
  • Propolis
  • Bitter Orange Peel

 

The Honey Colony site states “whole plants or mixtures of plants are more effective than than isolated compounds.”

Full details of the ingredients’ properties can be found here: https://www.honeycolony.com/shop/superior-cbd-oil/.

 

Why should I try Honey Colony Superior Cannabinoid Rich Hemp Formula?

I have a genetic condition called Ehlers Danlos Syndrome (hypermobility type) which means that my body does not produce collagen in the normal way – normal tissues containing collagen stretch & rebound like an elastic band, whilst mine is more like chewing gum!  It affects my joints, causing pain & dislocations, my circulation (Raynauds and Postural Orthostatic Tachycardia syndrome – I pass out regularly!), my gut, my bladder & my nervous system.  Cauda equina syndrome after a lumbar disc rupture many years ago has left me with chronic pain in my back, leg & foot.

I have struggled to gain any real pain relief in recent years and have taken a cocktail of drugs including the opiate Oxycontin (oxycodone), various antidepressants used for nerve pain and the gold standard for nerve pain, Lyrica (pregabalin).  Last year I had a spinal cord stimulator implanted to help relieve the nerve pain and my hospital insisted that I wean myself off the Oxycontin. Whilst I’m pleased to be off the opiates, a downside has been a huge increase in my joint pain so having been asked to write a review for Honey Colony I felt quietly hopeful & excited!

The Product

The hemp formula arrived in the UK well packaged and in a bottle of good quality & appearance – dark brown to preserve the qualities of the formula from light damage, with a pipette dropper lid and a black & bronze label.

It is recommended that the product is taken 3 times a day, placing 4 drops under the tongue for 90 seconds – sublingual for fast absorption into the blood stream.

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The product is a strange sludge colour, but please don’t let this put you off!  I found the taste bitter at first but after several doses my taste buds had adjusted and I was able to detect the sweetness of the honey.  For me this was a similar taste experience to that with oxynorm elixir!  Unlike some other CBD oil products on the market which use olive or coconut oil, the Honey Colony Superior Rich Hemp formula does not contain a carrier and does not need warming to thin the consistency.

The All Important Question – Did it help?

I went into this trial with an open mind and without reading any other reviews for this or similar products.  I haven’t used CBD products before so I am unable to draw comparisons between this product and other CBD products on the market. The immediate difference that I noticed was to my sleep. Like many chronic illness sufferers, my sleep is at best disturbed and at worst non-existent.  The particular type of spinal cord stimulator that I have cannot be used overnight and so I have to switch it off.  Without the oxycontin my nights have become worse from both the nerve pain and joint pain.

My nights have definitely been more settled following a final dose of CBD oil before going to bed – the muscle spasm around my joints is improved and I feel generally more relaxed.  I can’t pretend that I suddenly sleep all night every night, but I think that during wakeful periods I am less stressed.

My pain in my joints & soft tissues is definitely helped by the CBD formula – the relaxed feelings come within about 30 minutes and last for several hours.  This allows me to perform some of the moderate exercises that are essential to keep me moving & to  ensure my mobility does not further deteriorate.   The jury is still out with regards to the chronic nerve pain that I have in my back, leg & foot – I plan to continue monitoring this alongside the scs over coming months.  The temperature has dropped in recent days and so my pain has worsened – this will be a really good test period for some improvement.

I am completely realistic after so many years with chronic pain and do not expect a “cure” but any relief is really welcome, so I am thrilled that I am able to feel more comfortable in my shoulders, hips and hands particularly.

Prices, Value & Comparisons

Honey Colony products are available for shipping to the UK, but cannot be bought from suppliers here.  So when calculating costs a shipping fee must be considered.

A 30 ml bottle of the Superior Cannabinoid rich hemp formula retails for $92.55, with a current conversion of £74.73 and various reductions are available for larger quantities (https://www.honeycolony.com/shop/superior-cbd-oil-3-pack/). superior-3pack-600x600 The current postage on one 30ml bottle to the UK at Priority International rate is $48.75 or £39.36, or first class rate is $22.75 or £18.37.  The exchange rate has altered since the Brexit vote in the UK and unfortunately for me makes the product and postage rate higher as the pound falls against the dollar!

The product does feel expensive, particularly as I am no longer physically fit enough to work and we rely upon disability benefits & are technically a low income household.  However having now done a little research and value comparisons online with other products, I can see that other CBD oils claiming to be of a similar quality are comparable – it is difficult though as I may not be comparing like with like.  My verdict is that for the results I achieved, this product does offer good value and I would purchase under different financial circumstances.

Any Special Considerations?

Honey Colony recommend that pregnant and breastfeeding women consult a doctor prior to using the product.

It is possible for the consumption of CBD oil to result in a positive drugs test for THC – whilst this should be well below legal limits, it must be noted by the individual (in the same way that eating poppy seeds can result in a positive opiates test occasionally).

My Conclusion

I have been impressed with the results that I have achieved using Honey Colony Superior Cannabinoid Hemp Formula health supplement whilst caring for my symptoms from Ehlers Danlos Syndrome.  Whilst I have not eradicated all my pain, I have achieved a better sleeping pattern & have gained relief for my joint pain.  When personal circumstances allow, I plan to continue using this product as part of a pain relieving programme.

 

DISCLAIMER: all opinions stated above are my own and based upon my own experience.  I am not authorized to give medical advice and am no longer registered as a nurse.  Please consult your doctor or seek medical advice before commencing any health supplements/medications.

When Chronic Pain requires drastic action

On By Claire Saul (PainPalsBlog)In chronic pain, Ehlers Danlos Syndrome, Spinal cord stimulator1 Comment

I want to share a story published this week in the British press and the email that I have sent on behalf of everyone suffering with chronic pain.

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Dear Daily Mail,

Thank you for sharing the story of Hannah Moore, the young lady who has chosen to have an amputation to help relieve her chronic regional pain syndrome(CRPS).  I know that the majority of people will be unable to understand why she would choose such a drastic route, but those of us living with constant intractable pain will understand the lengths that one will go to for any relief.
I have lived with chronic pain for many years now and have undergone various major back surgeries in an attempt to give me some relief.  My first operation, aged 21, followed me taking my nursing finals lying on a mattress!  Nursing at a time when we still “lifted” patients, combined with a genetic disorder of the collagen, undoubtedly marked me out for back & joint problems!  Following two failed back fusions in more recent years, last year I had a spinal cord stimulator implanted at St Thomas’ & Guys hospital in London and whilst this gives me some relief when it is switched on, it is not a cure..
The nerve damage in my back is permanent, as is the genetic condition (Ehlers Danlos Syndrome) causing faulty connective tissue to allow recurrent joint dislocations, circulation problems and more.  So….there is no cure, currently, for my pain.  I remember clearly the look of shock on a friend’s face when I said that I would happily swap my poor mobility for a permanent wheelchair IF it meant that I was pain free.  I would imagine that this brave young lady has come up against similar reactions.
Ironically I have recently acquired a wheelchair in order to give myself & family so more freedom, but I still do have constant pain which fluctuates in severity dependant upon the weather, my activity or for no reason at all.
I hope that with more recognition of chronic pain conditions, such as CRPS, that there may be some more understanding for this debilitating invisible illness.
Regards,
Claire Saul
A recent film has been made detailing life with CRPS “Trial by Fire” https://en-gb.facebook.com/trialbyfiremovie/
Link for the original story about 19 year old Hannah Moore – don’t be put off by the “sensational” headline

Stim Update!

On By Claire Saul (PainPalsBlog)In chronic pain, Spinal cord stimulator13 Comments

I started this blog initially to keep a record of my trials and tribulations as I had my spinal cord stimulator implanted, but it has evolved into well, ramblings maybe!  Anyway having been reading posts on the support group site, I thought it was time I wrote a 7 month update!

I still feel that I’m learning to live life with my stim.  What I’m about to write will probably be repetitive of other posts on this site, but a recap never hurts.  Living with pain day in, day out is really hard work – exhausting both physically and mentally.  I would love to be able to tell you that having a scs has made everything better, that the pain is gone and that life is back to “normal”.  But I would be lying.  Sorry to make things sound bleak for anyone waiting for a trial, but it is important to be realistic.  Those of us under St Thomas’ know that they pull no punches on their 2 week pre trial course in order to prepare us, but everyone’s pain and experience differs so that it is impossible to predict every eventuality.

For me there have definitely been enough positives that I would do it again.  The stimulation that I feel in my leg, foot & back does ease the pain the majority of the time.  It gives me a feeling of control back.  But a downside of this particular scs (Medtronic) is that in order to continue the pain relief, it must not be left switched on all the time.  St Thomas’ recommend several hours on, several off – but I am finding the periods of time when switched off very difficult to cope with, particularly at night.  I understand the rationale for turning the device off: if the tingling sensation becomes the body’s new baseline, then there is little room for manoeuvre with further pain relief.  But this doesn’t help me when I’m climbing the walls!!  Any advice from out there would be gratefully received….download (5)

I seem to come back to negatives, but I really don’t intend to.  I guess the nature of chronic illness, particularly pain, is that it is always a doubled edged sword.Double-Edged-Sword-of-Social-Media-300x228  As you already know, another major achievement has been weaning myself off oxycontin and it hasn’t been easy.  I feel proud of myself for being bloody minded enough to stick with the withdrawal and I can report that some of the opiate brain fog has lifted.  My memory is better – my kids might dispute this – and I have taken to social media as I feel more able to read blogs and facebook, twitter reports etc – again I’m not sure that the kids see this as a positive.  For me this is a sign that my concentration is improved and that there is a glimmer of the old me still lurking.   But..again a negative,  the pain has increased – I won’t dwell on this although I can relieve it by lying on my back and turning the stimulation up! Not particularly conducive to shopping.

My own post operative recovery was relatively smooth, but one of my pain group did not have such an easy time.  We are all warned about possible complications, but I’m not sure that we really think we may be in that odd couple of percent.  The post op complication suffered by my pain pal was an infection in the electrode lead site, which of course led to him being very ill.  Again I don’t want to frighten anyone, but it is important to be prepared.  The hospitals take swabs and St Ts’ are very clear that if said swabs come back growing any organism that the whole implant must be removed as the spinal cord gives a direct route to the brain .  In this case all’s well that ends well as he had another implant placed a couple of months ago…….however this did make another decide not to go ahead with the implant trial as he didn’t want to risk the same complications.

Headaches seem to be a common side effect of the stimulator – for some people more than others.  I have had them on and off, but another friend did experience them regularly in the first months post implant.  Charging the battery has not presented me with any major problems, although I have found that I need to remain sitting as the connection is too intermittent if I move about.  But I do find that the actual implant is quite painful at times and I have seen comments on the support group from others saying the same.  I am finally losing some of the huge amount of weight that I’d gained and this leaves the implant far more prominent under the skin.  I won’t even attempt to write the language that escaped as I caught the implant, but suffice to say that the air was blue!!!

So, 7 months on…..the young engineer turned 20 and passed his driving test (not sure which is more frightening); the A level student turned 17 and visited Parliament with us and attended a Euro debate with Chris Grayling arguing for Brexit – our son’s voice and own opinions are getting louder by the day and Politics may be on the agenda for uni; the lovely girl remains as untidy as ever, as politically correct (we get told off if we tease her brother for not being stereotypically gay enough – you know, tidy, love his mum) and showing great artistic flair. Whilst the kids probably don’t notice whether the stim has made much difference to my pain or not, Duncan would tell you that 7 months on he can see a big difference, even if I can’t always distinguish the good days from the bad.  It hasn’t made a difference to my worsening Ehlers Danlos (another blog post!) So no, it hasn’t been a miraculous cure, made me better or all the comments that people say/ask the chronically sick – but yes, I would do it all again in a heartbeat to just be able to experience some relief.

2016-04-29 19.05.58                                                      Student engineer’s first lesson2016-04-29 19.04.45

A level student drawn by his sister!                                                     

Retune & Reunion

On By Claire Saul (PainPalsBlog)In Spinal cord stimulator, UncategorizedLeave a comment

Last Friday was the 9 month follow up for our St Thomas’ INPUT pain group.  I went with mixed feelings.  Eagerness to see friends who understand me and trepidation for who the scs had been successful for.  Last May the eleven of us had such high hopes, desperate hopes.  But the pain team drew no punches when it came to the success rates – 8 or 9 of us would go ahead with the trial, and it would be successful for approx 2/3 of us.  I can still remember looking round the circle of grey faces etched with pain, as we all wondered who would be the lucky ones and silently praying to be among the number.

As it happens I needn’t have worried.  I had an appointment first with the nurse where I admitted to a pain flare up over the last few weeks – hence inability to manage to blog on top of life – I do think that this has been related to dropping the oxy dose.  Any suggestions out there for coming down from this final  12 hourly 5mg gratefully received!  My sleep is disturbed again and I’m waking early in pain, so the nurse says not to push myself with the drug withdrawal and definitely not to reduce the lyrica yet.  But I did get a retune!! images (16) On describing the stimulation and that it wasn’t quite covering all the pain regions now the levels are higher (inner thigh, undercarriage etc), my implant programme was changed to expand the band width of each electric pulse.  Imagine the pulse as a ball…..the diameter of the ball coverage has been increased, whilst the intensity remains the same.  It has really made a difference and not only am I feeling the stimulation more widely, but I am using a lower setting.  Win, win.  Back to the INPUT session ….

Only 3 of us turned up. reunion Dee and Ben, you are both of course let off……one in Guys having the permanent implant and the other snowed in up in Shrewsbury.  It was fantastic to see the other ladies, both whom I’ve kept in touch with, but we all would have loved to know how the others (the men!) have got on.  We did meet some of the participants in week 3 of a 4 week course which was interesting.  A couple of them had already had stimulators which had failed – one lady had received 2, both failed.  Jean and I both felt guilty sitting there with medtronics buzzing away pretty successfully!  Zena from our group decided not to go ahead with the trial for the moment and has had successful pain relief from epidurals at the Royal National at Queen Square.  I have experienced some stim envy over the last fortnight as Dee has had a high frequency stimulator fitted, which means that whilst she doesn’t feel an electric pulse, she can have the device on ALL THE TIME…….this means  ALL NIGHT.  I’m so jealous!!

We both have similar stories, similar failed surgery and pain in the same areas.  The difference is that we have different consultants – it is hard when 2 consultants in the same unit are saying different things!  Who do you believe?  I have been assured that I have the best device for me – apparently the rechargeable medtronic lithium devices can be reset to be used a high frequency, so it is always an option for the future.  Meanwhile I continue with the drug withdrawal – brutal – and hope for a decent night’s sleep!images (17)