Looking after number one

From past experience physiotherapists are not my best friend. Their well meaning advice has unfortunately lead to more pain and suffering rather than better health and recovery, so I'm always a little nervous when I get referred to see someone new.

Today I met a wonderful physio, who for the first time in my life recognised what could be causing my pain. My muscles don't relax after being contracted. They stay tight long after the exercise or movement has been completed, despite me being in a physical and mental state of relaxation. This explains a lot!

My EDS consultant, Dr Cohen, thought it may be beneficial to have trigger point therapy on my neck as I suffer with very painful muscle spasms. The physio I saw today found a trigger point and tried to release it but she noticed that my muscle remained tight, and it was still tight several minutes later.
At this point I explained the problem I'd been having with my hands. A couple of years ago when I was investigated for Chiari malformation (which thankfully I don't have!) I showed the neurologist how if I grip something tightly my hand doesn't let go. She didn't know what it was but later wrote to my GP saying it was myotonia, which was a rare complication of EDS. I later discovered that it is not a complication of EDS and I asked for a referral to see Professor Mike Hanna at NHNN in London at his Muscle Channelopathy clinic. I have an appointment there next month.

Because my muscles do not relax properly the physio thought that trigger pointing may not be so beneficial so she showed me an isometric exercise for my knees to maintain the strength. It was a simple exercise that I had no trouble completing but after doing it the physio noticed that my muscle was still contracted. I was laying on my bed, comfortable, warm and safe, physically and mentally relaxed but my right thigh was tense. The penny dropped. This is why I feel muscle pain around my joints. The muscles aren't behaving as they should and that's probably why I'm ending up with trigger points which cause even more pain.

We had a great discussion about what I can do to help myself. I've always found heat beneficial so the physio recommended using hot baths and my wheat bag for relief. We also discussed the possibility of muscle relaxants. I have a prescription for diazepam for my neck spasms but it's only for occasional use as tolerance is an issue with diazepam.

I always get confused about the conflicting advice I've been given but the physio told me I need to put the past behind me and start looking after myself. I need to be more aware of my posture and avoid hyperextending and subluxing my joints. I also need to be aware of how activities affect my pain levels and not push myself to the point of pain. I'm not doing myself any favours my running myself into the ground.

I asked the physio what could cause my muscles not to relax properly and she said it could be fibromyalgia. I told her about my argument with a rheumatologist who dismissed all my complaints as fibro and told me to take gabapentin and do more exercise. She said that gabapentin and pregabalin won't help me because I don't have nerve pain and that exercise doesn't help most people with fibro.
I now understand a little bit more about the cause of my pain it's all starting to make sense. For many years I have described my pain as feeling like every muscle in my body is tense, even though I am relaxed. It's taken over 20 years for someone to pick up on it and I'm very glad they have. I understand now why the rehab course at Stanmore make me sicker, not better. The physio said that stretching would not help me, you can't stretch tight muscles, it would only stretch the already weak and over stretched ligaments and would provide no benefit at all. My goal now is to listen to my body and not push it to the point of pain because I that will only lead to more trigger points and more disability.


So now I have a good excuse for taking a nice relaxing bath - on doctors orders! :)

The importance of finding the RIGHT doctor for you

Yesterday I spent seven hours in the car travelling to and from the Royal National Orthopaedic Hospital in Stanmore.  14 months after being referred to see Dr Cohen I finally got the opportunity to meet her, and I'm very glad I did.

I was a little apprehensive, especially considering my last appointment with her colleague, Dr Mittal (see A pointless trip to RNOH Bolsover Street) but this trip was definitely worthwhile!

Dr Cohen was awesome.  She's down to earth, approachable, very experienced in her field and keen to help. I came prepared with six pages of notes and copies of various letters and blood tests that I've had done locally.  She patiently listened to all of my concerns and offered constructive suggestions, helpful advice and a plan of action.

Dr Cohen agreed that an intensive rehab programme is not suitable for me at the moment.  I need to address some more immediate issues such as the pain in my head and neck.  She recommended that I see a community physio at home for an assessment and to learn some exercises that might help me.  She also recommended getting a Theracane, which in her words looks like a martial arts weapon!

We talked about my muscles and she said they are irritable and excitable.  I showed her the myotonia in my hands and she though the neurologist used the term to describe what was happening, rather than to diagnose a myotonic disorder but she agreed that it's worth seeing Prof Hanna's team at the channelopathy clinic just to put a line under it.

She gave me advice on sitting in good posture, it's hurting my sit bones so she suggested using a seat with more padding so I'm thinking about recovering my computer chair and padding it out with a little memory foam.

We discussed all my stomach and bowel problems and she's going to ask my GP to refer me to an EDS savvy gastroenterologist.  She also wants me to be assessed by an OT for compression gloves.  We discussed pain medication and she suggested a few options from low dose pregabalin, low dose pain patches and duloxetine.  It's all about balancing the benefit and the side effects.  I'm not keen on pregabalin and duloxetine as I've read too many horror stories about withdrawal and I've had bad experiences with gabapentin and prozac so I might give those a miss.

We talked about me using elastic ankle supports when I sprain my ankle, getting Dr Marten boots for ankle support when walking (not that I do much of that), finding a relaxation technique that works for me, FODMAP diets and loads of other things.

It was a really positive appointment.  Dr Cohen is going to write everything up in a letter to my GP and she'll send me a copy to as my GP surgery is very good at losing important letters.

I'm very grateful to Dr Sobey at the EDS Service in Sheffield for recommending Dr Cohen.  I only wish I'd seen her first instead of Dr Mittal because I might have avoided the physical and mental stress of pushing myself through rehab.  I was so upset when it didn't work, I blamed myself even though I gave it 100%, and I was  and even more upset when Dr Mittal refused to help me because "the only treatment is rehab".  I'm glad that Dr Cohen gave me other options to consider.

I've seen a lot of doctors in the past 24 years and only now am I learning the importance of finding the right ones.  One good doctor is better than 20 bad ones and even though I am suffering today after the 300 mile round trip to Stanmore it was worth it.

Thank you Dr Cohen!

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.

Hello Watford!

I've just arrived at Mercure Watford hotel to start my Stanmore rehab programme tomorrow.  I'm pretty nervous about it all but I know I'm lucky to be here and I'm determined to make the most of it.

My room is Ok, a little tired and dated but its quite big and has everything I need (although more storage space and power sockets would be nice).  The only problem I've encountered so far was actually getting to my room.  The hotel layout is a bit strange with the reception and dining room on the ground floor and rooms on the lower ground floor.  I arrived on my mobility scooter but and was given a room on the lower ground floor but the lift was broken so I was taken around the back of the building only to find there was no ramp to get up the kerb tothe pavement.  So I went back to reception and eventually they found someone to take me around the other side of the building to get in a side door and I made it to my room.  Reception gave me a courtesy call just to check everything was ok, which was nice.

So this place is going to be my home until Friday.  I'm missing my husband and the kids already but at least I can message them on the Internet :)  I'll post tomorrow and let you know how I'm doing.