Managing POTS

Since being diagnosed with POTS I've been trying out all kinds of things to manage my symptoms.  Here are some of the things that have helped me.

This is not intended as medical advice.  Please consult your doctor before trying anything new.

DRINK! 

I always feel worse when I'm dehydrated so I try and drink 2-3 litres of fluids a day.  I drink bottled water as I don't like the taste of our tap water and I also use High5 Zero tablets.  It's an electrolyte tablet that you add to water to make a refreshing drink.  Berry is my favourite flavour. It contains sodium, magneisum and potassium, and has no artificial colours, flavours or preservatives.  It does contain artificial sweeteners (sorbitol and sucralose).

You simply drop one tablet into a 500ml water bottle and let it disolve.  It's takes a couple of minutes.  The taste is quite pleasant, like weak blackcurrant squash.

You can buy them from various sports websites online.  Shop around for the best deals.  They cost around £4 for 20 servings, that's just 20p per drink.

Discount Supplements

Wiggle

Chain Reaction Cycles

There are other products on the market, such as Nuun tablets, but they contain artificial preservatives and sweetener and I personally didn't like the taste.

I have been advised it is possible to drink too much, which is not good for you.  Too much plain water can leave your electrolyte levels low so it's probably best not to exceed 2-3 litres a day.  A good indication of your hydration is the colour of your urine.  Pale yellow is good, clear means you've drunk too much.

COMPRESSION!

My GP prescribed thigh high compression stockings on the NHS but they were a disaster.  The pharmacy assistant had never measured anyone for stockings before and she didn't quite get the size right as they were so tight on my thighs they rolled right down and cut off my circulation.  The fabric was a rough, itchy nylon and I couldn't stand the feel of it against my skin so I ditched them and tried something else.

I regularly wear bamboo knee high compression socks from a website called Butik21.  They are soft, machine washable and just look like ordinary socks.  When I wear dresses I wear ordinary support tights from Matalan which are a bargain at only £3 a pair.  They don't give the strong compression my POTS nurse recommended but they do make a difference.

I did try 20-30 mmHg compression tights but they were expensive and so difficult to put on that I put my finger through the fabric trying to pull them up!  I have since learned that wearing disposable rubber gloves helps a lot when trying to get tights on as they grip the fabric far better than fingers and you have less chance of snagging them on a fingernail.

In the summer when I want to wear sandals with trousers or maxi dresses I wear open toe knee high stockings from Pebble UK  They are great with flip flops and they stop your toes getting too sweaty when the weather is warm.

My POTS nurse also mentioned shapewear as a possible compression option.  I find that control pants are useful (and improve my figure) but the high waisted ones make my reflux worse.  I have read that abdominal binders are commonly used by POTS patients, especially in the USA, but again if they are too tight or too high it can cause problems if you have reflux.




SALT!

I never used to put salt on anything but that was before I was diagnosed with low blood pressure.  There are various recommendations about how much salt you should have.  I liberally put it on everything now.  I don't measure it I just add it to my food, as much as I can stand.  I have recently been using pink Himalayan salt.  I don't know if it's any better than regular white salt but it is a pretty colour :)

Salt doesn't help everyone and you should check with your doctor before increasing your salt intake.

AVOIDANCE!

It might seem obvious but avoiding things that make my POTS worse is a good thing to do.  Alcohol makes me feel a whole lot worse, as does standing still (ever get the feeling you're sinking into the floor?  Yup!  Me too!) Getting too hot makes me feel worse so when we do get a glimpse of summer I'll be the one hiding indoors with the curtains drawn.  Stress is another trigger but it's not always possible to avoid stressful situations but cutting out the drama wherever possible helps.

Chronic Pain and the "F" word

When you have suffered pain for more than three to six months it gets labelled as chronic pain.  EDS patients have often suffered a lifetime of pain so this label is easily applied to them.  The question is, it is helpful?  From personal experience I don't think it is.

Medical professionals have their own and sometimes differing understanding of chronic pain.  Most assume it has no physical cause because it if were caused by an injury it would have healed by three to six months.  This is a reasonable assumption but EDS patients are awkward and don't follow the rule book.

For example if a normal person sprains their ankle it should feel better in a few weeks with appropriate treatment (rest, ice, anti-inflammatory medication).  If they are still suffering pain after six months then the doctors assume it is "chronic pain" and explain it by using analogies about faulty pain signals or pain gates being left open.  They encourage exercise, physiotherapy and continuing normal activities.  They might prescribe medications like gabapentin and pregabalin for nerve pain.  This might help some people with chronic pain but my experience as an EDS patient is different.

I frequently sprain my ankle.  It doesn't take a forceful injury for me to have a sprain .  My ankle is hypermobile, the ligaments are too stretchy and I can go over on my foot just turning around in my kitchen.  I go through the normal healing process but six months later it still hurts.  Why?  Because my ligaments are stretchy and every time I turn around I keep spraining my ankle again and again. 

I don't have chronic pain that continues after a single sprain, I am repeatedly spraining my ankle so it never gets to heal properly.  I also get more pain due to muscle spasms as the muscles are overworked trying to do the job of the dodgy ligaments.

 

The confusing thing for medical professionals is that some EDS patients don't swell up when they have an injury.  I'm not sure if we know why, it could be due to the reduced number of receptors in joints or because we damage our ligaments rather than our tendons and muscles.  If I had a pound for ever time a doctor told me there's nothing wrong because it's not swollen, then I'd be rich!  It's much easier and convenient for them to diagnosed you with chronic pain and blame you if the treatment for chronic pain doesn't work than take the time to figure out what is really going on.

It's not a great situation for an EDS patient to be in because ignoring the pain and pushing yourself to exercise can sometimes make things worse.  What we need is proper understanding of the injury and appropriate treatment.  In the case of my ankle I might benefit from taping to stop myself hyperextending it, or strengthening exercises so my muscles can help stabilise my joint without taking on the entire load of the ligament when it is sprained.  Getting that kind of help is next to impossible unless you live in London and have access to one of the few expert physios in the country.

There is also the "F" word.  I'm not cursing, I'm talking about fibromyalgia.  Many EDS patients are diagnosed (rightly or wrongly) with fibromyalgia.  It's a diagnosis of exclusion based on a symptom list including all over pain, pain on light touch, depression, insomnia and a series of tender points.

 

I'm sure there are some people who have true fibromyalgia but it can also be a bucket diagnosis used doctors who are baffled by the patient but can't think of what else to call their symptoms.  Unfortunately this "F" word can cause a lot of trouble if your underlying problem is EDS because people with fibromyalgia are reassured that their pain is not caused by an ongoing medical problem or injury and they are encouraged to do aerobic exercise as the endorphins will reduce their pain.  It's not so great for people with EDS and can leave them with serious injuries.

EDS patients can appear to have fibromyalgia because they can have trigger points, which rather confusingly are in similar places to the tender points used to diagnose fibromyalgia.  They both hurt if you press on them but they are quite different things. Trigger points can be knots or lumps in muscle which form following microtrauma, such as the overuse of a muscle taking on the load of a ligament in the hypermobile joint of an EDS patient. It's easy to understand why tender points and trigger points can get confused!

Another treatment for fibromyalgia is gabapentin or pregabalin.  I know some people find them helpful but others, like me, do not.  They can have unpleasant side effects (gabapentin turned me into a drooling zombie!) but as with all strong painkillers they can also mask the warning signs of injury.

I had a conversation about pain killers with a physiotherapist.  They recommended stronger pain relief but I explained when I tried it I ended up feeling worse.  I am in pain every day and my pain killers relieve that pain a little bit so that it doesn't prevent me from doing some activities.  When I feel my pain increasing to a level that I cannot tolerate then I know I've done too much.  If I take strong painkillers they mask the pain, I am not aware of the warning signs and I push on regardless.  Then when the painkillers wear off I am in more pain than when I took them.  The physio said if I am pushing myself to the point of pain then I am doing too much.  I should stop before I feel pain, but that is difficult to do when every movement causes some kind of pain. 

For me it's not about pain gates, anxiety or fear of movement, it's a case of my body is literally falling apart and it hurts trying to keep everything together.  My joints are hypermobile and  nearly 40 years of using them the wrong way has taken its toll.  I don't need to be told my pain isn't real, I need expert advice on how to move properly and limit my injuries, then maybe my pain won't be so bad.  Unfortunately there are very few EDS experts and the NHS doesn't allow for this kind of long term treatment.  Until things change EDS patients are going to be labelled with chronic pain and the "F" word and suffer at the hands of ignorant doctors and physiotherapists. 

I'm not saying that all exercise is bad but it has to be personally tailored to the individual needs.  I have been told I should try tai chi.  I'd love to give it a go but I can't stand unaided and raising my arms increases my POTS symptoms so unless the aim of the exercise is to make me fall over then it's not going to be a great option for me. 

EDS patients are tricky, it's a battle just getting the right diagnosis but I hope that in the future that doctors will learn to appreciate how we are different and how important the right treatment is for us.

Discharged!

I've held off writing this post until I'd calmed down about it.  I've tried not to get upset but I am very protective of my family and I cant abide people telling lies.

A week ago I received a letter from Dr Mittal, my consultant at RNOH Stanmore. It was quite short and basically said my last consultation with her could not be completed due to my partner's rude and aggressive mannerisms and shouting in clinic.

WTF!

She said she offered to transfer me to Dr Cohen's care but I already told her I had an appointment so she has discharged me.

I'm not going to waste my time listing everything that was wrong in her letter but I couldn't let it go, especially as she sent a copy to everyone on the rehab team and Dr Cohen.

I wrote a dozen angry letters back, just to get my frustration out of my system, but they were all too long and ranty so I wrote a short reply putting forward my version of events and asking her to retract her statement about my partner or at the very least put my letter on file.

It cost a bomb in stamps but I didn't have much choice unless I wanted the whole staff at RNOH thinking my partner is a rude and aggressive thug who has nothing better to do than shout at doctors.  I know Dr Mittal won't like it but there are two sides to every story.

I have since been told that my appointment with Dr Cohen has been cancelled because it was made in error.  I have been referred as a new patient and I am bqck on the waiting list.  Hopefully she will be able to see me sometime next year, as long as Dr Mittal's letter hasn't scared her off!

A pointless trip to RNOH Bolsover Street

I am still so angry right now, mostly because I knew it would be a waste of time but I also knew I had no other option. Frustration doesn't even come close to describe my emotions.

After my failed attempted at the Royal National Orthopaedic Hospital's Ehlers Danlos Rehabilitation Programme and subsequent feedback to the team, a follow up appointment was made for me to see my consultant, Dr Mittal, at 10:30 on Monday 4th August 2014 at their clinic on Bolsover Street in London.

To be honest I had my reservations.  Dr Mittal was quite nice last time I saw her but she wasn't that helpful.  She also misdiagnosed me with carpal tunnel and prescribed wrist braces that I didn't need, but that's another matter

After checking the price of train fares I telephoned Dr Mittal's secretary to see if there were any later appointments so I could catch a cheaper train.  I was told I was the last one in clinic but it didn't matter if I was a little late as Dr Mittal would still be around to see me.  I told the secretary I would try my best to be on time.

Ten days before my appointment the secretary telephoned be to confirm what time my train would be arriving. I told her the train got into Kings Cross at 10:05 so I should be on time for my 10:30 appointment.  Sorted

No.

I arrived at the hospital reception desk at 10:25.  The nurse called me through and told me I was early, my appointment wasn't until 14:00.

What?

They had changed my appointment time and not told me.  This was not good.  I had already booked non-refundable train tickets for 13:48 out of Kings Cross.  The nurse checked with the doctor and said they would fit me in at the end of clinic.  Phew!

I sat and waited but I was still rather cross.  I got in to see Dr Mittal earlier than I expected to.  She asked me what did I want to see her for.  Erm, the appointment was made for her to see me.

I started out trying to explain how the rehabilitation course was not helpful for me because my existing medical conditions prevented me from fully participating and the physical demands of the course made me worse. She didn't seem the slightest bit interested.

I tried to talk to her about the head and neck pain I've been suffering from. My GP and the pain management doctor both told me to talk to my EDS consultant about it.  She refused to talk about it because she only deals with EDS.

WHAT?

I mentioned my autoimmune problems and how I'd recently been diagnosed with Sicca/Sjogren's.  She didn't want to know.  She only deals with EDS.  I told her the reason Dr Sobey from the EDS Service referred me to see Dr Cohen at the RNOH was to determine if I had EDS, an autoimmune condition, or both.  Dr Mittal told me again she only deals with EDS, this is an EDS clinic.  I didn't find this particularly helpful so I asked who could help me. She said a local rheumatologist.

*sigh*

I told her I've seen FIVE local rhematologists, they ALL missed my hypermobility and discharged me with no treatment and a vague diagnosis of CFS or Fibromyalgia.  I needed to see someone who was experienced in EDS and autoimmune conditions.  She said this was an EDS clinic and she only dealt with EDS.

Frustrated by this, but knowing it was a futile argument, I moved on.  I asked her about the myotonia in my hands. A local neurologist said it was a rare complication of EDS, which she should be able to deal with because she only does EDS, right?

WRONG!

Dr Mittal said I needed to speak to the rehabilitation team about that.

*headdesk*

I told Dr Mittal that I already had spoken to the rehab team about it.  They said talk her HER about it because, and they made this very clear from the very beginning of the rehab assessment meeting, THEY DON'T TREAT OR DIAGNOSE MEDICAL CONDITIONS.  Dr Mittal just said "absolutely".

So....?

I asked her if there were any treatments for myotonia.  She said there are no treatments for EDS, only rehabilitation.  That's not what I asked but I wasn't going to get any other answer from her today.

She only dealt with EDS and the only treatment is rehab.
She only dealt with EDS and the only treatment is rehab.
She only dealt with EDS and the only treatment is rehab.

I was getting a bit frustrated by this point.  I had a whole list of things I wanted to discuss with her that were directly related to EDS.  I took the list out of my bag and she dismissed everything on it.  She wouldn't talk to me about my head and neck pain (which is possibly EDS related), I need to see someone local about autoimmune, even though the local doctors can't help me because I'm too complicated, and the only treatment for EDS is rehabilitation.  I reminded her that the rehab didn't help me and she shrugged and said it doesn't help everyone.

I told her again, the reason I was there was to see an experienced doctor to figure out my complex health problems.  My husband was getting equally frustrated.  He asked if she had my original referral letter.  She ignored him.  He asked again, a little louder.  She ignored him.  He asked again, almost raising his voice.  This got her attention.

She told us there are acceptable levels of behaviour.  It took me a moment to realise what she was talking about.  She thought we were being aggressive towards her and she said she didn't have to see me if we behaved like this.

:O

She was the one being rude and not answering questions!

I got rather upset and said it was disgraceful that she refused to discuss anything with me.  I was so pissed off and angry that our journey had been a complete waste of time.  I appreciate she may not have been able to help me with all of my questions but she made no attempt to listen to me and no attempt to find the appropriate medical care for me.  All she bloody said was "I only deal with EDS and the only treatment is rehab," which is, in truth, absolute bollocks, but I refrained from telling her that because unlike her, I'm not that rude!

I was in a bit of a state in the waiting room, I asked the nurse who sat in during the appointment if our behaviour had been unacceptable and she said she wasn't allowed to say.  I spoke to the nurse on the desk and she gave me a feedback form and found the telephone number for RNOH PALS so I could make a formal complaint.

I know doctors don't have all the answers.  I know there is no magic cure for EDS but there are plenty things I can do to help improve my quality of life.  Rehab was not right for me at this time and in hindsight Dr Mittal should have known this, she even wrote in her letter to my GP that exercise makes my symptoms worse.  How did she expect me to cope with rehab then?  That's the problem.  I don't think she thinks at all.  She was brought in to ease the case load from Dr Cohen but she seems to be able to do little more than recognise the symptoms of EDS and make referrals for rehabilitation.

PALS telephoned me this morning, they are going to make an informal investigation, talk to the team and to Dr Cohen and see if they might be able to bring my appointment to see Dr Cohen forwards.  The 18 week NHS waiting time seems to be a fairytale when it comes to RNOH.  I was referred to Dr Cohen in August 2013 and I am currently due to see her in March 2015, which is a mere 19 months wait...

It's a good job I'm not ill or anything...oh... wait....   Yes I am ill, I am in pain and my condition is deteriorating.

I must look on the bright side.  At least I didn't have to pay for the consultation.  It only cost me £116 in train fares, one day off work for my husband to take me and push my wheelchair around London (I'm housebound without assistance) and the kind services of my parents who looked after my three children for the day.

I'll keep you posted.