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I get episodes of debilitating chest pain that knocks me down. The episodes usually last 15 minutes but they are debilitating when they occur. They are random and some days they occur over and over again. My doctor says it is costochondritis and I know it is a common thing for EDSers, but is it suppose to be a debilitating, knock you down, so you can’t even speak, kind of pain?
ShondaI get episodes of debilitating chest pain that knocks me down. The episodes usually last 15 minutes but they are debilitating when they occur. They are random and some days they occur over and over again. My doctor says it is costochondritis and I know it is a common thing for EDSers, but is it suppose to be a debilitating, knock you down, so you can’t even speak, kind of pain?
ShondaWhat a great question!! Personally, I don’t *think* chosto. “typically” causes that kind of pain — it’s generally more of a constant ache, from what I’ve read. I can certainly see why we would get that, especially since our ribs seem to subluxate if we just look at them funny. 😉 I’ve looked into Prinzemetal’s angina and histamine producing angina — here’s a link: http://www.ncbi.nlm.nih.gov/pubmed/1793697 . Frankly, I think most of us have experienced this pain, but none of us have been fully evaluated. Chosto. is the easy ‘go-to’ diagnosis. But is it the right one? What do you all think?
I get episodes of debilitating chest pain that knocks me down. The episodes usually last 15 minutes but they are debilitating when they occur. They are random and some days they occur over and over again. My doctor says it is costochondritis and I know it is a common thing for EDSers, but is it suppose to be a debilitating, knock you down, so you can’t even speak, kind of pain?
ShondaWhat a great question!! Personally, I don’t *think* chosto. “typically” causes that kind of pain — it’s generally more of a constant ache, from what I’ve read. I can certainly see why we would get that, especially since our ribs seem to subluxate if we just look at them funny. 😉 I’ve looked into Prinzemetal’s angina and histamine producing angina — here’s a link: http://www.ncbi.nlm.nih.gov/pubmed/1793697 . Frankly, I think most of us have experienced this pain, but none of us have been fully evaluated. Chosto. is the easy ‘go-to’ diagnosis. But is it the right one? What do you all think?
Yes! That does sound more like it. I had the feeling they were giving me their best cop out guess. I will research this more. We have to be our own advocates and figure this out on our own first. Thanks Dr. Diana!
I haven’t had this sort of pain as a grown-up but I certainly remember something very similar as a child, where I couldn’t breath for the pain in my ribs and it lasted a few minutes then went as quickly as it came, I had to breath very shallowly during an ‘attack’. My doctor just said growing pains I think, I never did get a satisfactory answer really, well not an explanation as such. Thank goodness I haven’t had them for years.
Barbara
(UK)Hi Barbara,
Doesn’t it seem like all doctors do is tell us it is this or that, and not to worry. Argh…makes me mad. Sometimes it is a zebra! They are doing more harm than good by being so dismissive. If just one doctor would take responsibility for one patient’s health it could mean less medical cost and better patient outcome. Now doctors are more worried about geting you in and out , and not getting sued, that they loss the ability to truly be of help to a patient.
ShondaI think if doctors were bothered about getting sued, they’d be more conscientious and do something to help us. I think the opposite is true, nobody bothers to sue them, so where’s the risk ? There’s obviously very little internal monitoring, so basically, if they turn up for work, listen to the patient, dish out a few pills (so long as the pills aren’t harmful) they get paid regardless, whether what they have done for the patient is successful or not. There is no incentive to cure us, or even attempt to lessen our symptoms, they just carry on regardless, knowing they are on a win:win. The system is all wrong!
They ought to have to complete some kind of feedback e.g.
Patient X reports symptoms a,b,c,d,e,f,g they were given XXX drug and symptoms are gone
or
Patient X reports symptoms a,b,c,d,e,f,g they were given XXX drug and d,e,f, symptoms persist,
therefore given ZZZ drug and referred to Cardiologistand so on and so forth until ALL symptoms are dealt with.
Certainly something better than what we have now!
Regards
Barbara
(UK)Barbara,
I am a new user, diagnosed at 15, doing a PhD in Chemistry at Cambridge and sooo thankful to have found pretty-Ill! I am currently in the States recovering from a series of stem cell and other regenerative joint procedures because my experience of medicine in England is…RUN! A year and a half ago I broke my toe and requested an X-ray of my GP because I know with my EDS, things just need to be handled differently. He refused and told me to wear “supportive shoes” for the 45 minute walk to and from my lab. Several visits back to him (during one he decided to manipulate it to see if it was broken, displacing the fracture) 2 visits to A&E over two months as I progressively became unable to walk at all, the last in which I requested the MRI my American doctor said I needed and they sent me on my way saying they agreed, but had no authority to order one. I eventually had to get to London to see private Doctor who did the MRI, found 4 foot fractures, bone marrow lesions and nerve damage which required a cast for 6 months, all of which could have avoided by simply treating my broken toe! Then last November in my UK official EDS evaluation the consultant manipulated my knee for range of motion despite my plea not to…and the next day it dislocated such that I needed to go back to the states again. Lastly, 9 weeks ago both knees, back and shoulders all gave out at once and I was unable to leave my flat for 3 weeks and I felt more ill than I had ever felt in my life. My GP said it was either a virus or I was depressed. I traveled home to the states to find out the “virus or depression’ was a dural leak, and we are still trying to figure out exactly what happened to cause such a profound and sudden “disassembly”. As someone who has lived in the UK for only two years it seems that the medical system is crippled by the lack of authority to practice good medicine. Has your experience been different? Have you found any doctors who understand Classical EDS and associated issues and do you have any suggestions on how to deal with EDS and NHS?Dear oh dear, I’m so sorry to hear this. I wish I could say my years of treatment (or, more to the point ‘lack of treatment’) had been different – but I’d be lying. I bet you are quite nervous being in the UK, for that reason!
Thank goodness I have a GP now, who’s trying his best for me (though his hands are somewhat tied by lack of support service structure). I think you need to change your GP, for certain.
I have however, eventually managed to get on the Diamox / Zantac / Zyrtec protocol (after much pestering and persuading of my GP) and thank goodness I did. It has brought a fair bit of improvement. Two consultants were involved, an immunologist and a neuro-opthalmologist but, taking info gleaned from Dr Diana, I persevered and it paid off.
The trouble is, a lot of our medical signs are subtle and not widely known. It’s up to all of us to try and change this (educate at every opportunity!) and post new ways of detecting problems, on the forum.
I’ve attended public meetings at hospital and spoken out as much as I could, of our plight (without taking over the public forum, lol!!) I wrote 11 posts, to the Dept of Health, when they asked for info from people suffering from rare diseases. I think some of it was taken on board because I have seen some changes but there’s still a long way to go.
I wish you ‘All the Best’ with your PhD, will you be going into medicine ?
Barbara
(UK)Thank you so much for this advice, Barbara! I agree that the key is really having a doctor who is flexible enough to understand (or learn) that that there are symptoms which, though no cause for alarm in a patient without EDS, could well indicate something serious in an EDS patient. It’s fantastic- and encouraging- that you have been able to get your GP on board, and also that you’re working to make the health care system more amenable to this sort of approach for patients with “invisible” chronic diseases in general. I’m also glad to hear that you’ve had good results with the diamox/zyrtec/zantac regime- I certainly plan on talking with (probably not my current, but another more flexible) GP about it.
My research is actually on developing detection systems for the study of toxic species (protein aggregates) in Alzheimer’s disease. Interestingly enough, we expect vague similarities between the mutation-induced misfolding events in some forms of Alzheimer’s disease, and the altered collagen structures observed in some forms of EDS!
All the best 🙂
VictoriaMy research is actually on developing detection systems for the study of toxic species (protein aggregates) in Alzheimer’s disease. Interestingly enough, we expect vague similarities between the mutation-induced misfolding events in some forms of Alzheimer’s disease, and the altered collagen structures observed in some forms of EDS!
All the best 🙂
VictoriaHi Victoria,
Good for you girl! From what I’ve heard, I think many of those with early Alzheimers get fobbed off, like we do. I’m all for research into ‘detection systems’, anything that will help detect an illness as early as possible, to stop people having to endure the endless mysery and problems they have to go through now, to get proper medical treatment.
Regards,
Barbara
(UK)I think if doctors were bothered about getting sued, they’d be more conscientious and do something to help us. I think the opposite is true, nobody bothers to sue them, so where’s the risk ? There’s obviously very little internal monitoring, so basically, if they turn up for work, listen to the patient, dish out a few pills (so long as the pills aren’t harmful) they get paid regardless, whether what they have done for the patient is successful or not. There is no incentive to cure us, or even attempt to lessen our symptoms, they just carry on regardless, knowing they are on a win:win. The system is all wrong!
They ought to have to complete some kind of feedback e.g.
Patient X reports symptoms a,b,c,d,e,f,g they were given XXX drug and symptoms are gone
or
Patient X reports symptoms a,b,c,d,e,f,g they were given XXX drug and d,e,f, symptoms persist,
therefore given ZZZ drug and referred to Cardiologistand so on and so forth until ALL symptoms are dealt with.
Certainly something better than what we have now!
Regards
Barbara
(UK)hi Barbara,
In the states to many frivolous malpractice suits have been filed. Making doctors not wanting to spend the time on difficult patients. We are instead referred to so and so. Without anyone looking at the big picture. Now doctors are forced to see 6 to 10 patients an hour. As you can imagine that does not work. They don’t want to take on patients that are hard personalities and hard disease because that takes up to much time. I have now been to two geneticist, but neither will manage me. My poor PCP is nice, but she is no expert on EDS. I am not going to get political here, but all that you complain about in the UK is starting here in the USA. Medicine needs to change. It is stuck with old ideas and needs to catch up with the latest technology. It needs to be about costumer service and run like a business. Competition forces doctors to stay up to date and keeps them from being lazy.
Shonda
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