Ehlers-danlos/arthritis who knows

[Drowningnotwaving74]

During covid I started with what we thought was plantar, took naproxen life went on.
3 months ago had incredible pain and stiffness in my hands particularly my fingers. Thought I had broken them
Saw a locum who suggested rheumatoid arthritis.
My mother has it
Blood test came back negative. I requested a referral.
After much fighting with GP got one and I saw them 2 weeks ago.
Another blood test some xrays, no results yet, he kept mentioning how loose my joints are and threw in ehlers-danlos, osteo and coeliac as potential diagnosis.

Since the consultation visit I have been in absolute agony, back of my heels, hands, elbows and now my knees.

What do I do now? Can't take codeine forever, shattered, work is a nightmare.

Does ehlers-danlos cause this level of pain?

you could be hyper mobile this causes low muscle tone and pain I have hyper mobility due to an additional disability. also one of my dc has a different disability and is hyper mobile and has knee issues they were referred to physio and has an exercise programme sadly I just take painkillers.

I used to take amatryptaliine which worked well I hate taking codine it's horrible I take anti inflamatories and paracetamol.

I've got eds with arthirits, knee dysplasia and ME and im in agony all the time.

Always been double jointed am almost 50 and the pain is the last couple of years.
Ramped up majorly last couple of months
Feet and hands are so sore. And I'm exhausted all the time.
Thank you everyone back to GP I think.
I need to decide if I should call in sick tomorrow as office politics aren't helping

I am hypermobile across all major joints and then some. Physiotherapist told me this not a medical dr so never explored beyond that. Exercise is critical especially as I age. End up with extremely sore hands (unusable) if I don’t keep up weights + exercise. Not sure if it will help you but might be worth a try. Start easy and slow; proper form is important. Pain is extremely tiring

that's probably not that I'm a Dr but more than likely where your pain is coming from. also your age sadly.

if you are not up to work and your tolerance is low I'd phone in sick

I have both and in my experience the pain from each is very different. Ehlers Danlos pain feels like it’s coming from my ligaments where they’ve been over stretched or from where my muscles have had to overcompensate for instability in other areas, RA feels like it’s IN my joints and comes with morning stiffness, swelling, and in a very bad flare they get red and hot.

Worth noting that you can have sero-negative rheumatoid arthritis, where it doesn’t show in your blood tests.

Rheumatologist thought not, joints have twisted, I can see the difference as can my partner. There normal apparently?

Pain is a constant throbbing, and I am the little mermaid and I'm walking on broken glass/knives.
Heel pain is at the back and toe pain is the three middle ones.
It's hands, feet, elbows and knees and today my hips have joined in.

Grr

Were you tested for coeliac op?DD has it and looking into EDS.They can go hand in hand

He said they were going to as part of the blood test.
He also sud my feet was osteo as the pain was in the heel bone.

I have been so much worse since I went and i just feel like a wuss l work with migraine and this has floored me.

You don't have psoriasis/close relatives with psoriasis, do you? Psoriatic arthritis is very similar to rheumatoid, and usually doesn't show up on blood tests. Lots of tendon/ligament involvement too - at my worst I can't walk or drive. Very treatable, though, if it's that - lots of different types of meds which can help.

Mine started with fingers/hands - it was the top joints of my fingers which were the worst, and apparently that's fairly typical of PsA, whereas rheumatoid tends to be knuckles. Disclaimer - my highest medical qualification is a B in GCSE Chemistry in 1993 😁

I have hypermobile EDS. Symptoms worsened a lot in my late 40s. I now get partial dislocations in my knees, thumbs, shoulders, and toes. I have teribble pain in my hands and feet too. I couldn’t work for several months. I am now on hydroxychloroquine and after a few months it has had some benefits such as I don’t have fevers any more but Is still have a lot of pain.

Nothing shows up in blood tests - lupus has been mentioned RA ruled out. After 5 years I still have a lot pain and now I’m looking for a rheumatologist to see privately and get a second opinion. I feel like I have the flu most days and I have terrible fatigue. I have had to change my job now work part time and from home but many days I struggle to work due to pain and feeling unwell.

a friend has a type of RA that doesn’t show up in blood tests. I thinks it’s called Seronegative RA? I think they had to do other tests as well as going by her symptoms and family history to reach a diagnosis .

Everyone with EDS has different presentations even with the same type of it. I have classical EDS and the signs go back to before I can even remember. Poor muscle tone at birth, didn’t walk till 2. I cant remember a time when I had enough energy to get through a day. All through childhood I had frequently Cricked neck, tendonitis in wrists from writing , bruising, poor healing, aching muscles after walking, gnawing stomach pain after eating. As an adult this all became a daily feature along with tendon tears, bulging disks, early osteoarthritis, insomnia, . I only got a diagnosis when one of my DC was being tested for it. No pain I nave is ever symmetrical and most pain is caused by overuse or injury caused by ligament strains, tears and worsening arthritis as I age.

I think with your family history an autoimmune condition sounds very possible and needs exploring. RA, Lupus, coeliac, could be causing your pain. I really hope you get a diagnosis and some treatment that relieves it 🤞🏼

Thanks all
I have always bruised easily, and been slow healing but we also have von willebarnd in the family so it was sort of glossed over.
Incredibly clumsy
As I said I have a high pain threshold but this is flooring me, last week was brutal min 14 hour days so my hands have been locking and I had to use my teeth to unlock them.
Can't take codeine forever.
Hair is falling our, and to be told nowt wrong with you, that's how hands look, when myself and my partner were both saying 'not my hands' is dispiriting.

You poor thing. You just need to be firm that all tests to try get to the bottom of what is going on are done. It’s awful to be in so much pain and to be in limbo. Hair loss also sounds auto immune. You probably know that EDS isn’t an immune condition but I thought I’d mention it just in case. My late DM obviously had it as well as one of my DBs and DC. We have all got/had similar symptoms but to differing degrees. Keep going and I really hope you get somewhere with a diagnosis and treatment soon. Codeine doesn’t sound to be the right thing for you 💐

EDS can cause a lot of pain, yes. Strengthening the joints is crucial. Mine can flare with hormonal fluctuations, which happen a lot around late 40s/50s.

It could be autoimmune and EDS/connective tissue disease at the same time, which can mean you have pain from inflamed joints and/or tendon issues and pain from damage to ligaments/their inability to hold you 'together'.

For your feet, get arch supports and wear new running shoes that are wide enough for the insoles and for your toes to spread out. Wear them all the time, no exceptions. This could improve your feet, knees, hips and your back. Wearing compression leggings with a high waist can also give some relief or comfort, underneath standard clothing if necessary for work.

I'd also ask the GP to trial steroids for a period, as you weren't offered a longacting steroid injection at Rheumatology. They do have risks, but if they give you relief temporarily, not only do you have some respite, it also substantiates there being an autoimmune element to your pain and exhaustion.

This part is shit. Utterly shit. But if you get the diagnosis(es) and start treatment, it can improve almost as dramatically as it started.

I am a hse manager and moved to sketchers arch support safety shoes. Also working mainly from home which helps.

I have EDS, as does Dd and a friend of mine. My friend is very badly affected, needs crutches to walk with, has a blue badge, can’t walk more than about 20yds even with crutches.

I have constant low grade pelvis pain, back ache, I’ve had very bad issues with an ankle which affected my mobility for years but is improving. My osteopath said the best thing I could do was weight lifting to make my muscles stronger so they can cope better with over compensating. I lift three hours a week now and it’s helped.

get your vitamin D levels checked as well as low levels can cause widespread pain.

Oh and I also saw a podiatrist and got custom made orthotics for my shoes.

Im not absorbing vit d or folic acid,.my levels were really low despite taking supplements for years.
It's why he wanted to test for coeliac.
Sorry everyone it's really really bad today and I'm fed up lol

Yes, that sounds like it could be coeliac. Someone down thread said coeliac and eds often go hand in hand. Dd has both, so your symptoms could be caused by more than one thing!

Got report
Vit d levels 31
Areas that don't hurt showing osteo

I'm angry, I take vit d, I have for 5 years plus, I have been taking double the dose so where is it going?
I also told gp and rheumatology this
He had decided that it was osteo and it was in my thumbs and big toe. When doing th me manipulation it's my heels and 3 middle toes and my fingers 2nd joints that hurt, they weren't red so it isn't rheumatoid. My mother has rheumatoid again with no factor, my hands have changes shape and I can't walk.

What now?