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Ehlers-Danlos Support UK
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Trying to figure it out

Hi Everyone,

I'm Hannah, I'm undergoing investigation to find out what's going on but I suspect something autoimmune/connective tissue as I've had a million arthiritis tests and nothing has come from them.

I have mild hypermobility, chronic widespread joint pain and stiffness, reduced mobility, muscle pain and spasms, reynauds, IBS, breathlessness, fatigue, trouble sleeping, frequent minor illnesses (cold & sore throat) and pins and needles and loss of sensation in my hands and feet.

I find heat and pacing and grading activites help but any further advice would be welcomed. My doctor has instigated blood tests to check inflammation levels but I have no idea what else would help come to an explanation or diagnosis, are there any posts explaining people's diagnosis stories?

I'm feeling a little lost, and given this is the first time in years a doctor has taken me seriously I want to get the most out of it.

Thanks,

Hannah

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Are you seeing a rheumatologist?

I was tested for loads and loads my body, like many others, hardly ever shows inflammation markers, I have diagnosis of EDS 3, Behcet's disease, Costochondritis, vasculitis issues associated with Behcet's, mitral valve and regurgitation associated with EDS and a host of other associated issues associated with both Behcet's and EDS, gastric, bowel, connective tissue, joint issues associated with both conditions.

Originally was referred to a rheumatologist specialising in joints and then this last year moved to a rheumatologist who is also a specialist in connective tissue disorders and has a greater understanding of my autoimmune conditions.

No amount of blood tests have ever indicated my conditions and this is true for so many people who are left in chronic pain and discomfort, I was simply told by a rheumatologist in 2015 to go home and take it easy and rest up every 20 minutes, 12 months later I was being reviewed for Behcet's by a rheumatologist in the same hospital in the next room to the rheumatologist who said he had no idea why I got oral and genital ulcers...

Keep asking questions and ask to be referred to specialist, do not be fobbed off by results coming back into your GP. My GP diagnosed me with Fibromyalgia and when I said I had a good friend with Fibromyalgia and I felt nothing like that and I wanted referring to a specialist my then GP was affronted, my husband was with me, and decided to attend my appointment with me after I continued to get differing reasons from GP's for what was going on with my body. He had picked up the fact the GP kept saying "I think it might be fibromyalgia" my husband said well it is or it isn't what is it because you keep saying "think" the GP could not give a conclusive answer.

We all to often sit down in front of our GP's and never question them and yet they are not the experts in specialist fields. I respect them and I think they have a great array of experience in a huge amount of conditions but they have a huge problem with referring you on to the specialist.

Good luck with finding answers to your pain and discomfort.

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Thank you. I'm jumping through the hoops for now as i know they can't refer me on without bloods but as soon as they come back I'll be pushing for a referral

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But they can refer you please do not think they cannot, so if your blood tests come back all normal what then. I had all the blood tests, listened to them for years and they did nothing for me other than prescribed masking medication in the form of pain relief, meanwhile I was making my body worse and ended up hardly being able to move and they gave no answers absolutely nothing. Having to ask a GP to refer you to a specialist is not the way it should be but you have to when they have no answers and the tests they do return nothing. That's why specialist are there.

AiMax is right in making sure you take everything along with you. The first rheumatologist never picked up my mitral valve and regurgitation was associated with EDS I had to tell him I had read it in the leaflet he gave me, along with gastric issues, it was rather pathetic. Read up about everything, monitor your symptoms and chart them, take photographs of everything that is visible, for me trying to argue with photographs of oral and genital ulcers, septic throat, raspberry tongue, spots on my skin and red joint is hard for any doctor to do.

Take care and hope you can get answers soon.

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Hi Hannah. I don't know whether this will benefit you. I'm just about to go to my GP with a bunch of symptoms that correspond with EDS. In the past I would go with an individual symptom and often be given no answer for it.

What I've done is write out a list of all my symptoms including what I had since birth, things I wouldn't consider as I've always had them, i.e., deafness, tinnitus, painful hip, etc. I've also asked my blood relatives their health as well. In my family from both my mum and dad's side there are corresponding conditions that can come under EDS, for instance, on my dad's side my grandmother, father, uncle x2, cousin, brother, son and daughter all have gastrointestinal problems, intolerance and allergies to foods and other things. There is a clear generational link with this and other symptoms. If you're armed with information the doctor can make a better diagnosis and it saves time.

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Hi Hannah

I'm dad of an 18 year old daughter and unfortunately I am hearing the same thing over and over again in that (particularly) young females are experiencing a wide range of symptoms that "old medicine" simply does not recognise. We have had fights (in one case a stand up row between me and an arrogant consultant) to get doctors to "hear" what Morgan has been experiencing.

She has hEDS, Reynaud's, as 'standard' diagnosis. She has been vomiting all food for just over a year now. She has lost 5.5 stone in weight and now weighs less than 8 stone. She has had the tilty headed "it must be anorexia/bulimia" patronising looks. She has undergone surgery to exclude stuff that meets the gastro team's criteria. All negative. She has recently bumped into a fantastic surgeon, Dr Siddiqi, who has listened and told her that medicine does not yet understand her conditions. He is striving to change that and is in constant discussions with his peers. He believes she has, amongst other things, MCAS (Mast Cell Activation Syndrome) - essentially her body over produces histamines that causes allergic reaction to seemingly normal stuff like food types and particularly medication. She has taken anti sickness drugs that work for 3/4 days and then suffers anaphylactic reactions! scary stuff. She has rashes, tingling in her feet and hands, pain all over, waves of nausea etc

I'm waffling but when I read your message I saw a lot of her in what you were saying.

Advice from an old git who has not had to suffer like so many of you, be strong and argue your case. The medical profession do not understand your condition. Everyone in this group suffers, in different ways, but still undoubtedly suffers. Referrals are great but only if they are referring "towards something" rather than to pass on the problem to the next medic. You may feel like a hypochondriac, we certainly did, but please push to see the right person. You may well need to see a "new" medicine person so (much as I hate it( Google doctoring helps.

We wasted one year of my daughter's life believing the system will sort it out...…..I wish I had that time back!

Good luck in your fight!

Micky

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Hi Hannah! This post could honestly be describing my last few years! I likewise suspected something autoimmune however after a whole host of tests have been told it’s hypemobility (most likely hEDS) and am about to start some physiotherapy for that. I was suprised by how many things can be affected by Hypermobility so definitely don’t rule it out! It might be helpful to look at the EDS website (it has got a one page checklist for what a doctor looks for when diagnosing hEDS so it might be worth seeing if that seems to fit your symptoms?). I would definitely say to keep an open (but researched) mind about what might be going on.

I was diagnosed by a rheumatologist after a suspected lupus diagnosis turned out wrong. From my understanding, diagnosis can take a little while just to make sure that something else isn’t being missed. I know how challenging it is to have no answers and I hope you start to receive answers soon !! Best of luck

Hannah

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I feeling a similar frustration to yourself. I have 3 kids who all have similar symptoms to myself, we all have hypermobile hands, feet, knees, elbows, very very soft stretchy skin which splits very easily (going in and out of pockets) we all have Femoral anteversion with out being pigeon toed (feet face the right direction) but we all have very tight hamstrings, hypermobile jaw, neck and spine. My index finger and thumb over lap when I hold around my wrist and my thumb sticks out at end of my palm when held by my fingers. I have elephant tracks on my knuckles and can do all the “tricks” with my hands body. My arms dislocate at the shoulder when pulled,carrying shopping. My toes dislocate when I’m walking. But we can not touch the ground with straight legs and touch the ground with flat hands, we have very tight hamstring as Iv found out from physio. But my kids have been in a lot of pain. So I asked GP to refer to rhymatologist for them (he said he could not for me, so revered me to physio therapy. Anyway at the rheumatologist app, because my kids can not touch the ground flat handed with straight legs she said it’s not EDS... my physio seems to think my hyper mobility is causing me lots of issues and said I have no stability in my joints, ( I am short sighted, have ibs, hetial hernia and a small ambilical hernia, and have bad scaring from an op from 4 years ago that looks like it was done 3 months ago, get very dizzy and am always tired, I’m 32 and feel like I’m 82, I get pins and needles and numbness in my hands and feet.) I’m so frustrated that with so many symptoms of EDS we are not being diagnosed because we can’t put our hands flat on the ground... with them not taking into consideration that the hip with knee bent can move out of range to point it pops out of the socket... but the tight hamstring prevents this when leg is straight. Iv was diagnosed when I was a kid with gowing pains they didn’t even pick up on my Femoral anteversion when I was a child, I just don’t want the same for my kids I see them struggling daily, I’m up with them at night when they crying in pain. they told me they will not operate to straighten my legs due to my hyper mobility as it will apparently be a waist of time. Am I going mad or is this more than just hyper mobility?

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Honestly I don't know what it could be but if you're all in pain you need to keep going back and telling them or keep a diary of symtoms so that they can see how it affects you. I know how frustrating it can be. I also have mental health problems so for years I've been told I'm making it up or seeking medication/attention. I can honestly say no one would choose this!

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Bloods came back and they're 'normal'. Looks like i'll be sent to the MSK team and told I'm fat and should lose weight. Something has to be going wrong if i'm in pain and having all these symptoms. I'm totally fed up

and could cry.

Test resultErythrocyte sedimentation rate;Full blood count Report, Normal, No Further Action (Patient Informed)

Monocyte count - observation (42N..) 0.6 10^9/L [0.2 - 0.8]

Lymphocyte count (42M..) 1.8 10^9/L [1.5 - 4]

Basophil count (42L..) 0 10^9/L [0 - 0.1]

Eosinophil count - observation (42K..) 0.2 10^9/L [0 - 0.4]

Neutrophil count (42J..) 3.8 10^9/L [2 - 7.5]

Mean cell haemoglobin level (XE2pb) 31 pg [27 - 32]

Red blood cell count (426..) 4.12 10^12/L [3.8 - 5.8]

Red blood cell distribution width (XE2mO) 12.9 % [12 - 15]

Mean cell haemoglobin concentration (429..) 33.8 g/dL [32 - 36]

Nucleated red blood cell count (4266.) 0 10^9/L

Haematocrit (X76tb) 0.377 [0.37 - 0.47]

Mean cell volume (42A..) 91.5 fL [82 - 100]

Platelet count - observation (42P..) 279 10^9/L [140 - 400]

Full blood count (424..)

Erythrocyte sedimentation rate (XE2m7) 15 mm/hr

Total white blood count (XaIdY) 6.4 10^9/L [4 - 11]

Haemoglobin concentration (Xa96v) 12.8 g/dL [11.5 - 16.5]

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Try not to feel to downhearted by the normal blood tests. I know how diffficult it is to be undiagnosed but you have to remember that being undiagnosed doesn’t make your symptoms any less real. Conditions like hypermobility don’t test positive in bloods anyway so it’s perfectly possible that you are suffering with some type of hypermobility syndrome and hopefully MSK can begin to figure that out for you. I know this feels difficult, however you are getting closer to figuring out what is going on and it is important to remember that! I hope that everything goes well when you get to see MSK and that you get answers.

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