I’m currently in what feels like a loop hole. Last Monday I was finally diagnosed with ehlers Danlos type 3 & fibromyalgia - after being misdiagnosed for 8 years. Luckily during my appointment with rheumatology I was experiencing a flare up so it helped with the diagnostic process. Bare in mind this was last Monday, it is now the following Wednesday and my report hasn’t been sent over to my GP surgery. Without the report I can’t have my medications changed to help (wanting to change sertraline to a low dose amitriptyline), nor can they prescribe any short term pain relief. My body has become so used to paracetamol and ibuprofen having being relying upon it for many years. As the doctors can still do nothing and my flare up is continuing I’m having to take time off work to be able to cope with my symptoms. I’ve literally been taking 5 baths a day to help cope with the pain. My boyfriend can’t even hug me.
One way my body reacts to pain is by making me extremely nauseous and vomiting frequently. This obviously affects my ability to work, throwing up every 20 minutes, and doesn’t help with the joint agony or mind fog.
Not being able to go into work due to my surgery still not being able to do anything, not even passing me on information regarding pain management clinics, is making the vicious cycle of stress = body meltdown a whole lot more intense. I feel like I’m at the point of giving up already.
I’m sorry to post such a downer, but if anyone could please advise me of what to do - I’d be ever so grateful.
Thank you for reading, and I hope you have a lovely day. x
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Gorillaz69
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healthunlocked.com/fibromya..., morning you are certaintly going through the mill at the moment, I would ring the rheumatologist secretary and ask for results/medical history etc to be faxed over , say you are very poorly and need help with your doctor, hopefully they should be no reason why they cannot do this then you are able to ring your surgery and hopefully get an appointment quickly. You need something for the sickness as well you must be very drained right now, try keeping chilled water down so you do not become hydrated, you do sound like your in a bad flare at moment and I’m guessing your resting as much as you can. I've posted a link above if you would like to lock your posts as only our community can see . No harm in chasing this you want to get better and get the help, sometimes a phone call will give them the nudge they need xx
I can’t understand how Britain is so slow in getting information from one doctor to another. Even before widely used email, in France diagnosis report was faxed to GP day of examination, the next day at the latest. Any further delays would have had the population in uproar. If only Britain would stop the “ our NHS is the envy of the world” nonsense and look at how other health systems are run they’d learn a thing or two.
Sorry, my rant doesn’t help you but I understand your frustration, being made to wait while you’re in pain is just cruel.
The difference is that in France they spend significantly more per capita on Health than we do in the U.K. Not only that but the entire population have to pay compulsory health insurance. If you want the French system then you have to be prepared to pay more or live in 🇫🇷.
Have you thought about getting an inflatable hot tub, I live in mine during the hot summer months, I have it warm not hot as heated water badly affects my legs, but warm water certainly helps me with pain, as for vomiting, can drs not give you anti sickness pills if your vomiting all the time you can get dehydrated very quickly, or try ginger biscuits,
Usually takes up to 10 days to get a letter from hospital to gp, coukd always phone consultants secretary to ask her to fax letter across to gp
I’m so sorry you’re having such a bad time 😞 I’m not sure why they can’t give you more pain relief or anti sickness medications given how unwell you are feeling. Can you speak to the rheumatoid secretary and ask them to speak to the gp? Basic treatment should not depend on the consultant report though. It’s so shitty that they’re leaving you so unwell. Sending you gentle hugs and stay strong 💪🏻
Sorry to hear that you are suffering. Have you tried calling the Rheumatologist’s secretary? If you explain the impact on how you are feeling and the stress and anxiety because of your work and other obligations, maybe they could prioritise your report to your GP.
Over a number of years there have been significant cuts to NHS medical staff and in particular the admin staff and whereas 20 years ago a secretary supported one consultant and his/her team that same secretary might now have 3 or more consultants to look after and in that time she (my wife for example) would have been demoted under the Tory governments restructuring plans. As a consequence there are huge backlogs in paperwork. None of this helps the patients.
I don't see why your doctor can't start your amitriptyline without having the report in front of him,you will need to be weaned off sertraline anyway so you need to start it sometime before the sertraline is out of your body. Its awful to leave you in this situation, you need help now. Surely the gp doesn't think that you are lying about it?! Demand that the hospital fax your report over today and insist that you are given anti genetics and amitriptyline at the very least. Good luck.
This might sound a bit rebellious and over the top but if you are frequently vomiting, could you go to the surgery or have someone take you there? Nothing gets you seen more quickly and seen to in a doctor's surgery than vomiting in front of them. Trust me - the hospital will be contacted immediately to get your report over.
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