A little while ago I went to a rheumatologist to discuss my Ehlers Danlos and various pain management drugs.
At first, the lovely doctor was a little baffled as to why I was seeing her, as she was not a doctor who normally sees EDS – apparently in Tasmania, once you’ve gotten a diagnosis, you’re expected to stay at home and deal with it, not seek input from specialists. But maybe that was just the collective impression I’ve had from all the doctors I’ve seen.
We talked a little, as you do and she admitted that she knew very little about EDS, having only seen one, very mild case of it in her history of seeing patients. I wasn’t put off, I’d much prefer a doctor who admits they know very little and listen to me, rather than someone who knows very little, bluffs it out and ignores everything I’ve got to say.
Of course, we all know how bendy I am and I had to stop myself choking with laughter when she asked which joints of mine dislocate. I told her she’d be better of asking which ones don’t dislocate (to my knowledge, my right elbow is fine. So are my ring fingers. And I don’t think I’ve ever dislocated my spine. I’ve also never dislocated a patella, my knees when they dislocate prefer to pop out my fibula. Yay me) and so we worked through how broken I am.
We talked about pain management and she recommended a new drug, something that I’d not tried. It’s called Endep, and while it’s mostly prescribed for depression, it also works ‘off the label’ for insomnia (check) and pain (double check).
She was concerned about the possibility that my pain, while some of it is related to constant and recurrent dislocated, that it could actually be neuropathic. She was also quick to let me know that she didn’t think that it was ‘all in my head’ but instead, that my nerve signals were getting muddled and telling me I had pain when I didn’t.
Which um, hello pain episodes! I knew, from research, that my pain episodes were likely neuropathic in nature, but I couldn’t get my GP to listen to me properly when I tried to bring it up before. In his defence he is highly overworked, knows very little about EDS and so relies on me to research and present him with the best course of action. Fine when it’s ‘please redo my prescriptions’ less fine when it’s ‘I’m having issues with — and I need your help’.
Anyway.
I have pain episodes. They’re triggered by something hurting, something new, that my body isn’t prepared for, which in turn overloads my brain. When I’m having one, it feels like all my muscles are clenched, my skin feels like it’s burning and every nerve ending sets on fire. I can’t walk properly during one, because it hurts too much and if I’m touched suddenly, I have a panic attack because of the pain. It’s almost like an itch in the middle of your back you can’t scratch, your whole body focuses on it and everything else goes a little hazy.
To put it in perspective, a stubbed toe can cause a pain episode. My latest one was caused by my period starting, the period pain tipped my brain over the edge into a world of hurtiness.
The Endep, because they work on nerve pain, they help the pain episodes, something that no other (legal) drug has helped with yet.
So they’re working and working well – I’m managing to sleep again and my pain has calmed down. Inside a brain, the pain and anxiety centres are very close together (or else respond the same way to stimuli, I can’t quite remember), meaning that pain triggers anxiety and anxiety can trigger neuropathic pain
And there I was, falling apart, stuck in the centre of a giant vicious cycle. That I’ve now, hopefully, broken.
Of course, I’ve still got pain from the dislocations and I suspect we’ll see the onset of arthritis in my hands fairly soon, but the debilitating pain, that’s being helped.
I’m also still on a slow release Tramadol and a regime of panadol osteo (for bone pain) and it’s better than it was. I’m still fairly broken, but I’m not as messed up as I was.
I’ve got a referral to the pain management clinic as well, so I’m hoping that that will help a bit with the pain/anxiety cycle – but of course, like all good things it takes 9 months to get in to see them. Le sigh.
I’m in a good place at the moment, mentally (we’ll ignore my physical bits for now, fucked up mess that they are). Of course, there is a ‘clickiness’ in my heart, so I’m booked for an ECG to check my heart out and I’ve got a mild scoliosis that needs to be watched – something that I didn’t have a few years ago, but I’m in a good place.
Something that I definitely wasn’t a few weeks ago.
***
Updated:
A visit with the doctor has seen my Endep changed to Cymbalta, which in the long term will be better for pain and anxiety. That said, it’s currently making me completely sleepless, so I’m not enjoying myself very much. Sigh. It feels like a balancing act, trying to work out what works best with minimal side effects and long term issues.
I’ve been on endep for my chiari. I know, different disorders but same same if you ask me. My advice, endep helps with sleep but the best neuropathic pain reliever I found was Lyrica. Expensive but extremely effective. A less pricey option is gabapentin. Kinda the same. Unfortunately I can take neither in my trying to get pregnant state. But if you like endep, these two are ten times as effective. Good luck though and thank you for the advice on EDS during the week, now seeking a referral for myself and the oldest to a geneticist:)
i use to live next door to father and daughter who have scoliosis the 15 yr old girl has been in and out of hospitals most her life but recently had her back straighted as far as they can and also pins to hold it in shape its painful for her but she is just glad its nothing worse.im so sorry to hear about how tough life is for you especially having to raise small children in the mix i hope they can help make life alittle easier for you
You are one tough cookie, Veronica! You truly are.xxxx
Dear God.
I’m going to stop whinging about my clicky knee now.
How fantastic! Not the pain, obviously, but that someone is listening and you’ve found something to help. I really hope it continues.
Kim – I’ll ask about Lyrica next time I’m at the doctors. Thanks for that!
Candice – I’m all for easier!
Brenda – I know and that’s why you love me 🙂
Toni – But clicky anything is enough to drive you mad! You have my full permission to whinge.
Deb – I know and so do I!
That sounds like you had a wonderful consult 🙂
Fiona, it’s always nicer when they admit they know very little of EDS and listen! She was lovely, which helped.
Jeez lady! Good news and bd news, eh? I’m glad that the specialist listened to you. Have you noticed that it tends to be GP’s that don’t want to listen, or is tht just my experience? you’d think, given that they are NOT specialists and will NOT know what they’re talking about on most ubjects, that listening-to-the-patient would be the way to go, but in my experience they tend to resent the patient for knowing more and knowing that they hold the power in that situation, take advantage by withholding medical care if possible. My GP refused to believe/admit that Bug was having an allergic reaction to dairy via my breastmilk, and in fact only going behind his back to get a diagnosis from an actual paediatrician (who he reused to refer me to) showed him that he was wrong. I now refuse to deal with him, but I’ve also had problems with every other GP at that office. The paediatrician, on the other hand? A fricking saint. She just listened to me and confirmed what I already knew, and when I came back with another potential diagnosis months later, she quickly and happily confirmed that, in fact going above an beyond what I was asking for in terms of offering me treatments, and also showing concern about the affect Bug’s problems were having on MY health! SAINT!
I have a couple of questions about your meds. I know you breastfe Isaac until he self-weaned, did this have a massive impact on the meds situation? A.B is 12months old and shows no sign of even slowing down, and I’m slightly concerned that this may have a negative effect on any possible pain-management regime. There’s a big culture here of medical professionals telling women that there is no alternative but to stop breastfeeding instead of trying to find an alternative. I’m probably going to find it easier than most women to fight this because I’m already aware of it and if that’s the advice I get I’ll know who to contact for help, but I was just wondering if you got this sort of response when you were breastfeeding?
Also, with people (Medical ones) who didn’t know MUCH about EDS, were they ever dismissive or distrustful of your pain levels? I have a real (probably ungrounded) fear that a doctor is going to say ‘Oh it can’t be that bad, you don’t need pain medication, just get on with it.’ because they can’t understand that yes, I really am in ner constant pain, just because I happen to cope with it sufficiently to appear normal to the outside world.
Sounds like it was a very positive session. Hope it continues to improve for you and become more manageable.
A big hug to you and some positive thoughts.
It’s good that you can talk about it and thankyou for sharing 🙂
I don’t understand a lot about it but I know medication can work wonders in some cases. It has on my mum, you wouldn’t know that she has severe arthritis in her knees.
Arianette, I’ll email you this response too to make sure you get it.
Re: breastfeeding, I was given Tramadol + Mobic (anti-inflammitory) when I was breastfeeding, we didn’t explore the possibility of other options really. From what I’ve read, Endep shouldn’t be used during pregnancy or during breastfeeding, but I need to ask my doctor about that next time I see him. My doctors have always been pretty good about managing pain meds and BF, BUT, I’ve never had proper pain management while BF either.
And yes, I’ve had dismissive and distrustful doctors, they were the bad ones. Ones I’d like to see now that I’ve got a diagnosis just to say ‘SEE?! I wasn’t making it up and I wasn’t trying to get out of school. Fuck you!’ I’m also running into issues with my doctors saying ‘because of your age, we don’t want to start you on anything stronger…’ yes, I know I’m young, it doesn’t mean my pain is less, or I need less pain meds because of my age. That’s been my hardest bit to deal with. I understand the possibility of my body becoming dependant on the drugs and so I’m prepared to deal with that chance if my pain levels are lower.
Planning Queen, Thankyou! It was.
Yeay for meds that work and doctors who are willing to learn! I’m so glad to hear you’re starting to feel ‘better’ BG Xx
Glad to hear that things are improving for you, and that you have a doctor willing to listen and learn, two attributes that are not alway easy to find.
Phew. That all sounds very positive. I’m so pleased for you. (((happy hugs)))
It sounds like this doctor is a good one! I could not imagine dealing with all of this PLUS a crappy doctor (it sounds like you’ve had your share of those) that would push me right over the edge.
Yay on meds that work.
You deserve the BADASS OF THE YEAR award!
Wow.
So glad that some things are starting to get a little better. Boo on all the things that aren’t.
Yeah, totally not gonna complain about my knee ever again.
*hugs* sweety, I’m glad you’re feeling better and these meds are working for you. xxx
Hugs, am glad someone is listening.
Tanya – Thankyou 🙂
Bendy – Me too! And yes, yay for docs who are willing to learn.
Amanda – Don’t I know that. And yes, yay.
Barbara – It was one of the better appointments I’ve been to, that’s for sure!
Katie – Hahahaha. I want a button that says ‘Badass of the YEAR’ now.
Marie – Exactly.
Marylin – I give you full permission to complain about your knee. ALL dislocations hurt!
Tiff – Thanks. So am I.
Good to hear that the new drug regime is helping. Fingers crossed that when you eventually get to the Pain Management Clinic even more help will be forthcoming.
I’m so glad you found someone that is taking you seriously and is willing to try something new. I hope it works for you. You have amazing strength. You really do.
What??? They don’t give you certain drugs because of your age?? Your body dislocates and pops everywhere and they are worried about you getting dependent?? I think my heart would be skipping beats and stuff, too. I’d be so afraid of the next dislocation/bunch of pain that I would have trouble functioning. I would.
I wish you didn’t have to be so stinkin’ brave. Pain-free is better than brave. Brave stinks. 🙁
Sharon – That’s what I’m hoping too.
Kristin – You can thank my mother for that!
Mrs C – Yup, that’s indeed what the case is. I’m on low dose opiates at the moment and they take the edge off, but a bad dislocation they won’t even touch. The stabbing pain in my pelvis/hip today, they’re not helping with. So they’re only really working on the generalised achiness. But, I can’t have anything stronger, because of the chance of becoming dependant. I get that I really do, but it leaves me frustrated when things hurt and I’m having a bad day. The Endep however is helping with a lot of things and being able to sleep again is positively blissful.
I can’t add anything here. They’ve ^ said it all for me.
Hi,
I live in Germany. Have tried Endep (it has got another name in Germany) and Lyrica. Endep was good, but I gained weight and – worse- I got severe obstipation. Really severe. They gave me two bottles of a substance, from which a jigger-dose helps normally. Lyrica was better, but I noticed a change in my behaviour. I started to argue with everyone, even my closest friends. It was really bad. But at a lower dose than mine it might be fine. It might even be fine with the 300 mg I took, we all know, that medicine works different on different individuals. At the moment I take Lyrica only for a few days, when my pain is bad.
So sorry to hear, that you have to pay for the medicine. I am lucky with that, but most doctors have no idea what EDS is – so that is the bad side.
The worst thing about my pain is, that everyone in my surrounding says it is just in my head. Thats because I suffer from depression too, so although they know it is because of EDS, they blame depression on it. As if the pain wasn´t real.
I have EDS III and neuropathic pain and pain episodes too – been on Endep 50mg for 8 months now and have noticed a reduction in severity in the episodes and I have been on Lyrica 150mg now for 6 months (4 months before that was on 75mg) and Lyrica, to me, is god…the burning in my legs is waaaaaaaaaaaay less and so are the spasms I constantly have – I still have them all but nowhere near as bad…everyone around me can tell when I have run out of Lyrica – and cos the government is an ASS and WON’T put it on PBS for Fibromyalgia patients I am currently paying $124 a month for this relief…
Kylie, pls mail me at vendergood@web.de
Hi all!
I read this and just had to comment.
My wife Mel has EDS, Marfan’s Syndrome and a chiari as well as a seizure disorder. Unfortunately, with the seizures she has, Lyrica is out of the question and the way pain management goes in the states, i doubt she’ll ever be without pain. I wasn’t aware of Endep though, as noone has suggested it (and we don’t believe in the ‘It’s all in your head’ theory) but I’m going to mention it to my wife and discuss if she’d like to try something that has worked for others. She’s been on a steady low dose of opiates (Lorotab, Norco) and they keep her ‘moving’, but don’t deal with the ‘OMG’ pain she deals with anytime the weather changes or a joint pops out of socket.
I hope though that your new regiment continues to help you maintain a balance of life and all it’s challenges.
Hello David, I wonder, that your doctors say, that Lyrica is out of the question because of the seizures. It is a medication for epilepsia, so why should it do her harm? I once had a seizure myself and am seizure-prone and the doctors say Lyrica is allright for me.
Update on my situation: I take 300 mg Lyrica on a daily base now and my pain is much much better. Also this time no negative changes in my behaviour.
Reading this has made me reflect on some of the things that have triggered pain ‘meltdown’ (as I tend to think of it). Some of them are quite absurd, e.g. several years ago I was having highlights done at the hairdresser with one of those funny rubber caps where they pull your hair through the holes and she pulled one of the chunks of hair through a bit too hard and suddenly I totally seized up and had pain all over my body! They had to abandon the hairdo as I couldn’t stop crying and had to be taken home! So humiliating.
This is a very good post and I’m glad you found a doctor prepared to listen to you and be helpful.
Hi guys,
I’m new to the site. I was diagnosed with EDS a couple of years ago by Dr. Claire Francomano at Johns Hopkins in Baltimore (the guru of EDS in the US). Both of my daughters, 16 and 19 also have EDS, although thankfully my son,20, managed to get through without it. Being a single parent doesn’t help. I’m going BATTY gang. Ironically, I was a family physician before I became disabled with POTS, the blood pressure instability that frequently accompanies EDS. I have been in the emergency room over 400 times with blood pressure instability, chest pain, early coronary blockage, a dislocated and fractured ankle, 2 spinal fusions from spondlyolisthesis and scoliosis, a pacemaker implantation, ya da- ya da- ya da…. When I was diagnosed with POTS (POTS Place is the best WEB site for info on that), I saw that one of the causes of POTS was EDS. I remember thinking to myself, ” Self, someone would have told you if you had that.” Well, they didn’t. And in spite of my medical training, even I couldn’t convince anyone to listen to what I thought was a no-brainer diagnosis. It then hit me that it was more likely for one person to have a rare medical disorder rather than one person having 30 different things wrong with them. I thought if it took me this much time and energy to get someone, anyone, to listen to me, how does the average patient wade through all the literature etc. Since I couldn’t practice medicine anymore, I went back to school and got a Master’s degree in psychology, hoping to blend the healing of mind and body. I managed to start a Health Psychology group, but my daughters started getting symptoms and that destabilized my own cardiac situation, and I had to stop that, too.
The thing that is driving me the craziest is not my own situation, but watching my 2 beautiful daughters writhe in pain and have the medical community tell us that EDS patients don’t have pain. I agree, that as with most medical disorders, we are on a “bell-Shaped” curve, which means that the majority of patients have a moderate amount of pain, with some having very little and some having debilitating pain. Dr. Francomano gave me a consultation to give to my other docs, which indicates that many patients with EDS are diagnosed with fibromyalgia, hypochonriasis, depression, chronic fatigue syndrome, etc., so the true incidence of EDS is probably much higher than is currently estimated.
At least I got lucky, in that I got to practice medicine for 12 years and pursue my dreams, even if it wasn’t for as long as I wanted. But to watch my daughters as they struggle with the normal tasks of adolescence is tough. It is also really challenging for me as a disabled parent taking care of 2 significantly impaired kids. My oldest daughter has been on extremely high dose narcotics for a couple of years,, which the docs obviously are reluctant to continue. She tried gabapentin, Lyrica, Cymbalta, Lamictal and a number of other meds, but she also has Obsessive-Compulsive Disorder and Generalized Anxiety, and all these meds seemed to increase her anxiety. This makes sense, since a lot of these meds work on the norepinephrine, or adrenaline, pathways of the brain. My younger daughter developed symptoms more recently and doesn’t have the chronic anxiety stuff that Sarah has, so maybe some of those will work for her.
I would like to write a Health Psychology textbook for psychology and medical personnel, but it seems that it is all I can do to just go through the day. There is also a saying in medicine “If you hear hoof-beats, look for horses, not zebras”, meaning that horses are common around here, and instead of looking for a rare diagnosis, you are more likely to see something more common. When I told that to my oldest daughter, Sarah, she said ” But Mom, we’re a family of zebras”.
Thanks for listening. I salute all you zebras out there. Now, instead of listening to myself whine, I am going to take a few moments to pray for those families of the 9/11 attack, since it has been 10 years ago today. That was also the last day I practiced medicine, since the hospital I worked for let me go because I wasn’t providing “compassionate, high quality health care”, which is what they were all about. They didn’t want to acknowledge that I might be disabled.
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