I've been waiting for months to finally see a local Rheumatologist. I've been to Dr Alan Hakim in London and should have had my notes under normal circumstances. But he's moving premises so the notes are late, understandable. But it would have been perfect timing for local Rheumatologist. Saying all that it wouldn't have mattered because my GP only booked me in to discuss Osperosis which we know we I have. I can't take oral med because of gastric issues, so looking into injections. The appointment took a total of 10 minuted to tell me that I'm not high enough risk to have injections mostly because I'm not over weight and I need to eat more calcium and vitamin D rich foods which I can't and why I'm under weight!
So no discussion of EDS nor autoimmune diseases. And to add insult to injury he said oh yes I have seen you before and said you had Elhers Danlos. But no where in my notes does this appear! WHY??? Plus the GP lost my notes from the states when they changed over to computer. I despair ๐๐โน
Having said that the local Rheumatologist was very nice and does know Dr Hakim and I will most likely see him again. But NOT NOW because we were only allowed to talk about osteoporosis! And that I don't need treatment, just eat better. Which if you have gastric problems you know you can't just eat better!
I went shopping the other day and bought blueberries and plums which I can't eat but thet looked so lovely I just wanted to have them in the house.
I hope one of you has better luck than I at your next appointment. Every time I go there is either nothing wrong with me or nothing they can do.... Now tears have struck just writing that, I say tears... if I could make tears they would be streaming down my face, it's more the feeling of tears
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Ladyuponthelake
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My heart ๐breaks for you and that horrible appt. God bless you and comfort you in all your disappointment s your pain and suffering...and tearless exasperation. Gentle gentle gentle ๐ค๐๐๐๐xxx๐น๐น๐น
Really feel for you here, I have extreme GI problems too, erosive gastritis and very bad IBS, and I'm not banned from anti inflammatory tablets, I'm not even allowed them with Esomeprazole.
Can I just check, when you say you're not allowed injections, do you mean the won't give you vitamin injections? If so, take soft gel D3 capsules from health food shop, you can also get folic acid and B12 supplements. If its that they won't give you Cortisone injection, then that means they are correct because having Cortisone injections is a very very bad move if you have Osteoporosis because the cortisone can further damage the already damaged bones in afraid. If its the later, try some natural anti inflammatories such as Turmeric, garlic and ginger either in your cooking or in supplement form. The fresh ginger should help with the GI problems too.
I take an enzyme supplement from a company called Solgar, they're a bit pricy but they do work, they help the body to digest foods that might be difficult for some people.
Injections are instead of tablets for bone density so definitely not cortisone. Have never had that pleasure nor would like it.
I take folic and have B12 injections. I take chewable calcium and D3 so that'll be absorbed under the tongue.
I didn't think to tell them my Mum fractured her back they only asked about hip and back troubles were a way of life for us as long as I can remember so just didn't think. I'll most likely see him again and be able to tell him. Hopefully my thin bones will hang in there. Also I'm not over weight and I haven't broken bones easily, so I didn't fit criteria for injections. Not that I want injections, I think it's more that every time you come away from a Drs office there's nothing wrong with you and just get on with it. When your body is telling you otherwise.
I just came back from the Meds part of the pain clinic and was hoping for something topical like patches for nerve pain. Sciatic nerves are like fire. But sadly Lidocaine patches aren't relevant. So just get on with it. I've gotten on with it my entire life and last year my body said it didn't want to any more. So I guess I work on acceptance....
That's the problem with the NHS, you can only discuss the subject on the referral letter. No holistic treatment. I also have gastric issues and food restrictions because of them and I lost 1.5 stones 6yrs ago due to h pylori bacter as well as all the other stuff. it has taken me that time to put a stone back on. I use digestive enzymes to help break down food and get as much nutrition as possible and it reduces my indigestion, reflux and heartburn. I use a methylated multi vitamins and minerals and magnesium at night, Magnesium helps with muscle pain and cramps as well as keeping the stool soft and preventing constipation. I have osteopenia and reduced bone density. I use life extension bone restore and fat soluble vit D3 and K2-mk7 from maxx labs, all from amazon. D3 should be in fat not tablets because that is how it comes in nature, it is better absorbed when you drop it under your tongue, bypassing the gut. K2-mk7 directs the extra calcium absorbed because of the D3 increase into bones and teeth rather than soft tissue and kidneys. I also use curcumin and black pepper capsules opened and added to my vegetable stir fry, again curcumin is the active part of turmeric and works better in fat. Dr Hakim suggested glucosamine and chondroiton. I use lambert's glucosamine complete because it is the only one I have found that is shellfish free, I became allergic to prawns 10yrs ago. I use biocare megaEPA for omega 3 all to help with inflammation from histamine release caused by gut problems and injuries. I haven't had a cold or flu for years even though those around me have and I know I feel better on my regime. Our guts don't absorb well so you can have the healthiest diet going but it isn't enough, we need extra help.
Lots of great info! Some of it I do already but some is new and always so much appreciated! THANK YOU!
sorry for late reply have been at numerous hospital appointments. One being the pain clinic group which was good, the others were sadly not helpful. But we live in HOPE. I'll get researching what helps you.
I am so sorry for your disappointing appointment. I can relate to having had very many of those over the years and I know just how devastating it feels. But please don't let the experience get you down for long. Take some time to get over it, be kind to yourself and find comfort.Then once you feel stronger again, keep going!
For years I struggled to find answers and get any help. A lot of times I could not get myself to be taken seriously by most medics, they just didn't have the time or seem to care.. I received diagnosis' that did not answer all my ills and disability and Drs were often dismissive, or suggested I needed psychological help to 'accept fibromyalgia diagnosis' ๐ It was so difficult at times that I nearly gave up, but I needed answers, and eventually I got them!
An NHS consultation is often brief, with assumptions being made based on info the Doctor has been given in notes which dont always contain all the facts..
The majority of consultants never take into account the 'whole picture',only considering the body system they specialise in.Which is no doubt why it takes so long to get a diagnosis when multiple body systems are involved.
Due to my devastating NHS rheumatology experiences, I am avoiding seeing one again. I hope to rebook with Dr Hakim in the future for a follow-up and also other specialists. For me, I feel there is currently no point in seeing anyone about EDS -or related condition- who does not have knowledge of it...
When I saw nhs cardiologist, I took my diagnostic letter from Dr Hakim with me to give- investigations originated by Dr Hakim-as I knew of the connection, and luckily so did the cardiologist. There was nothing mentioned about my EDS diagnosis from GP in referral letter, only the cardiology test results..Although cardiologist was nice, he was about to dismiss me after ten minutes, so I spoke up and talked my case- something I wouldn't once have done-. He then gave me more time and tests on the day. All of which resulted in understanding and a diagnosis -postural hypotension, Autonomic dysfunction- and later a very good letter to confirm everything.
The rheumatologist you saw will unlikely to have had EDS knowledge enough-if any- to offer help in that area. He would also have been acting on the referral regarding osteoporosis and that is then usually all the consultation covers, unless you raise other issues but even then there can be little time available..
As you have seen Dr Hakim recently, he will have told you that he is available to be contacted should you need to.Remember to do this if you feel he could help you. He has been very helpful to my son since consultation.
Even though I am still relieved to have got a diagnosis for 'mystery' symptoms, the road is still bumpy. I find GP's know nothing so I am still left without help just as before. But because I mostly know what I am dealing with now, I am able to find appropriate ways to help myself as best I can, which means I dont visit GP or get referred to unknowledgeable consultants only to be frustrated and upset.
I am sending my sincere best wishes, love and hugs to you. We have all got stories to tell from our health journey. You are not on your own and we are here for you.โค xxx
Thank you so much for taking the time to share with me!
I did feel let down because I had waited for the consultation for quite a while and was supposed to have my clinic letter from Dr Hakim. and this Rhuematologist said But it just didn't work out that way. However this Rhuematologist noted that he said years ago I had EDS. I was blank because no where in my notes is this stated. But it is reassuring because Dr Hakim will send me back to him.
I think after today's appointment with the Pain meds consultant telling me basically there's nothing to do but get on with it and that EDS is just like Fibromyalgia (not that Fibromyalgia isn't painful) but it's completely different or it's part of but not the source. He also said my adrenal problems were from taking pain killers so I explained that would be impossible because I've been like that since birth and my mother and my daughter have the same issues.
I left feeling fine and about things, nothing changed. Now my mood has dropped... Yes feel like it's all in my head! Is it??? Maybe I'm just crazy...
Dear Lady, you are definitely NOT crazy!! I know how you feel though, I've had the very same experiences as those ignorant, uncaring Doctors have made me feel worthless too over the years. It really has an impact on your mental health when your already feeling vulnerable because of illness and pain. Those very people we trust to offer us hope just crush our spirits.. But you have already seen Dr Hakim and so you're in his care now๐. He is THE Doctor to see for Hypermobility/ EDS matters and his diagnostic letter will help move things forward..
My son and I have taken our letters to other consultations which has helped immensely. Our GP's have also followed Dr Hakims recommendations for further tests and treatments.
With regards to fibromyalgia. When I was diagnosed with it several years ago,no Doctor looked for anything else, putting everything down to it even though many symptoms and ills I suffered were nothing to do with fibro and it confused them. They just didn't have a medical curiosity..or simply couldn't be bothered to look for anything else..
I had to pursue a correct diagnosis, I felt I owed it to myself.. It was hard when Doctors were disbelieving. But when I saw Dr Hakim and explained it to him, he told me ' fibromyalgia is a collection of symptoms, and does not cause subluxations or dislocations' He even wrote as much - worded differently so not to point fingers- in my diagnostic letter. Wonderful!!
I wouldn't bother with that pain guy again, his remarks show a complete lack of understanding and that is unhelpful..I had a similar pain specialist insist I just needed psychological assessment, despite dealing with extreme pain from unprovoked physical injuries!.I decided that was not going to be the route to enable me to walk better!
It will become less confusing the more information you have.I read and read and found out as much as I could so I knew what I was dealing with..After my diagnosis I sent posters for Doctors on ' how to recognise EDS from various symptoms' to the GP and Doctors who hadn't recognised my symptoms over all those years and had began 'humouring' or disbelieving me. Those frustrating, devastating feelings I felt because of the Doctors I saw are now far behind me, and getting a correct diagnosis was worth it, especially for that๐ xxx
All my appointments were booked for after I had my clinic/diognostic letter from Dr Hakim. It was just unfortunate that he moving premises and admin is behind. Soooo excitement of help went to yet again disappointment.
I do apologise for not fully understanding your situation..But I hope you were happy with the consultation you had with Dr Hakim, and all the information you were expecting to receive was in your letter.If not, you should contact Dr Hakim to discuss it. If your disappointment is because of your letter arriving late, you can request it be emailed to you as I did. It will also be posted.. Very best wishes xx
No not disappointed with Dr Hakim in the least, felt very confident in him. He has such a lovely manner.
That's life though isn't it. It would have been a much better week had I had his letter but that's not always how life works. It'll come and I've had some rest now and feel less stressed. 5 appointments in 4 days just took it out of me. Actually it was supposed to be 6 but cancelled one.
I am getting an email clinic letter so that will be the start of some answers.
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Gosh Iโm so sorry to hear this ๐ I have a private rheumy appt this week and trying to make sure as well prepared as possible. I think weโre well sorted, but ANY tips from anyone much appreciated. Weโre travelling far for this one, and really have everything crossed ๐ค๐ผ
Hi. Lots of us have been seen privately and found it to be successful in giving long overdue answers and the all important diagnosis..In preparation for mine and my sons private consultation in London - we live in the North of England- I typed a medical history for each of us including all health problems; illness', body system faults etc from very young to present, diagnosed and suspected conditions. I typed a list of symptoms and a list of families health problems past and present I.e children, parents, grandparents- of what I knew- and I took copies of Doctors/ specialists letters and test results... Let us know if you would like to know anything else.. I hope it all goes well. Best wishes xx
Thank you both very much! Iโve got a loads of relevant family history, all my personal medical history/issues/diagnoses, list of prevailing symptoms broken into autonomic, joints, head, etc, blood results latest results , tests/treatments and medications Iโve had, current treatments and doctors, aids and supplements used, and various photos. Will get it printed and take it with me. Hope itโs enough! Really hoping this doctor is โthe oneโ and has a lightbulb moment ๐ซ๐๐ผ
You sound very prepared with all the factual evidence. For a knowledgeable EDS Doctor, all that will be enough to help put the pieces of the puzzle together.Very best wishes xxx
Thanks both once again. Iโm having to travel a while for this appt, not an EDS specialist unfortunately as too unwell to travel that far at the moment, but does specialises in connective tissue diseases, SLE, other autoimmune etc. So hoping they know enough, and that Iโve provided enough. Itโs been a LONG 7 years ๐... hereโs hoping ๐ค๐ผ๐๐ผ many thanks and very best wishes xx
As others have suggested... list of issues broken down into different eras of your life. As well as any treatments I've received in the past. Also I wrote queries of problems I was most concerned about and highlighted areas most painful or interrupted life the most. I also wrote a bit about who I am. How I've dealt with health problems personally and anything else that you think might be helpful for them to know. Because they don't know us at all and they have a short snippet of us. So tell them who you are. Like I told Dr Hakim that we never went to doctors growing up unless it was to go to hospital and that we grew up on a mountain with very old fashion values. It gave him an idea of how things have been dealt with in the past. It helped me anyways. I emailed this before the appointment so the Dr could know me before I walked in.
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Do I? 
ME (cfs). Not hEDS
๏ปฟVitamin Deficiency/ Pernicious Anaemia : How Common Are They With EDS and What's The Best Treatment for Us ? Please Tell Me Your Experience 