Linked to EDS?

[FlissFloss]

Hi everyone!

Just wondering if any of you might know what's going on! Wednesday night my upper arms felt like they were on fire. They were red but not swollen. Thursday morning I woke up and the whole of my upper torso felt bruised and sore and has been like that ever since.

My gp has called me back as my latest blood test results have shown something. I have underactive thyroid and vitamin D deficiency but never had this before!

Any ideas welcomed!!

X

[Hidden]

Sorry I don't know what's going on, have you been back to your GP? Hope you are feeling better by now? Do get it looked at and don't assume that all new symptoms are due to EDS. Hope you feel better soon. Hugs

[FlissFloss in reply to Hidden]

Thanks! It's still there but not as bad although a flare up last night on my face - my cheeks were bright red and it felt like sunburn! I'm at the docs on Wednesday so will ask. Something's come up on recent blood tests so hopefully I'll get some answers!

[Hidden in reply to FlissFloss]

I'm glad you are getting it checked out. Hope hou get some answer from your gp on Wed 😊

[FlissFloss in reply to Hidden]

👍😊

[Tillyray]

Hi FlissFloss. I am sorry to hear you're experiencing these things. I can relate to wondering what on earth is going on? I've had all manner of strange symptoms for years that haven't been understood..I have a diagnosis of fibromyalgia and a lot of pains have been attributed to it. Most recently Hypermobility, and I am going to see about it in relation to EDS..I have tenderness and feel bruised in various areas of my body at random times for no reason but always put it down to fibro?..I also get a red, hot,'tingling' face, it is mainly across my cheeks and I look flushed. It was once considered Lupus in view of my other symptoms, but always ANCA blood test is normal.My tingling, flushed face most often accompanies a flare of other symptoms when I am particularly unwell..

It can sometimes be a long haul to diagnosis when so many symptoms overlap with other conditions, but its good to have any deficiencies picked up on, as they can make all the difference to health..

Getting treatment for your thyroid will really improve things,as thyroid problems cause a lot of symptoms and very ill health..I always have a positive antibody result and My thyroid stimulating hormone (TSH) is always rising.But as my TSH is not above 8, no treatment is recommended. Getting treatment can depend on where you live or who you see, as some endocrinologists recommend treatment with the TSH being at different levels.I have regular blood tests to keep an eye on it.

thyroiduk.org.uk

I've just learned today my folate levels are low, so supplements will help with that🙂 wish it was always that easy!

Hope your feeling better soon x

[FlissFloss in reply to Tillyray]

Thanks Tillyray! I'm in levo for my thyroid, my antibodies were negatuve. My rheumy thinks I may develop some sort of autoimmune problem. My mum and gran both had RA and my cousin has sjorgens. My vit D is supplemented as well as it was virtually zero a year ago!

It's all a bit strange really, my arms aren't as hot now - comes and goes - but my face was bright red and burning last night across both cheeks and the bridge of my nose!

[Tillyray in reply to FlissFloss]

Yes it is often difficult getting an autoimmune diagnosed because many have similar symptoms and bloods can be normal.I hope you get to the bottom of it, but if you keep getting unusual symptoms keep a diary about them and take pictures of your redness to show rheumy. X

[FlissFloss in reply to Tillyray]

Hi!

So I talked to my gp last week. She couldn't have been any less bothered about it, despite my bring very clear that I was concerned. My bloods showed my thyroid was low - meds increased from 10mcg to 50mcg. My vit D is still on the low side but she wasn't too bothered about it as it alot better than before!

The only other thing was my liver enzymes were up. But she said it was just down to me being ill at the time. (Chest infection).

Any thoughts are welcome!

[Tillyray in reply to FlissFloss]

Hi Fliss Floss. I can understand your disappointment, frustration and feeling of wonder about what to do after doctor shows no concern. It's happened to me so many times, despite me being so ill with whatever I and various things showing up in tests-but sometimes not convincingly enough to warrant any action on Doctors part- and so I would go away and 'try' to carry on..Then, having 'left it', something would happen, like ruptured bowel or the recent drop-foot, and by that time -even with action taken- if treat as out-patient the whole system waiting for specialist appointments, MRI's etc is so long😕 I now have long term damage to my foot/ankle and no one apart from me is bothered!..

My thyroid antibodies are often rising but it all is below the level to warrant meds - according to endocrinologist in my postcode- I have been told ' it is likely to fail' and I have to have regular blood tests to keep an eye on it. thyroiduk.org.uk Thyroid problems can be major cause for a lot of malfunctioning. Thyroid is also affected due to other illness'..

All I can say is, I've learnt to push for what I want because I now believe what my own body is telling me, and I know how I feel!..I've developed a thicker skin and I will no longer be fobbed off! So if you're not convinced in your Doctors assessment, I would either talk to them about it or get another Doctors opinion..If you haven't already, you should ask to be referred to an EDS specialist. They're mainly based in London. Go private or ask EDS helpline about NHS specialist consultants. Best wishes and good luck x

Do keep a diary of your symptoms -how they start, what exactly, how you feel and how long they last- and take photos of your rashes. For me,this seems to have been all important as 'proof' .It helps towards a clinical diagnosis. x

[FlissFloss in reply to Tillyray]

Thanks so much! I was lucky enough to have Prof Bird diagnose me about 10-12 years ago. I decided to stay with Leeds as although they shut down the Hypermobility Clinic, they still have all the specialists and knowledge. Dr Bingham is brilliant!

It seems that my GP is passing the buck to Leeds constantly!

I'll keep a diary as you said. I use patientslikeme.com

It's a fantastic tool!

[Tillyray in reply to FlissFloss]

I'm glad you have a diagnosis,and have a good hospital with excellent specialist. It makes all the difference! 🙂..But I'm sorry your GP sounds to be disappointing. It could be your GP -like others- just isn't familiar with EDS and lacks knowledge?.Maybe you could give leaflets and additional info to your GP?..It is easier to have an understanding GP as they are quicker to access than a consultant...A good one, who doesnt claim to know everything, will accept information and look for the answers elsewhere in order to give good patient care..If you feel your getting nowhere fast, maybe ask to see a different Doctor at the practice and start again with them.

I hope you are ok, its hard enough without battling the Doctors😕..At least you're armed with great online support👍 Take care xx

[FlissFloss in reply to Tillyray]

I certainly am! I don't know how I didn't find this site/app until now! Between this and plm I'm truly supported!

I was very lucky with my previous two GPs. They were very forward thinking. I was able to email queries through instead of constantly going in to the surgery. Unfortunately he left the practice 3 years ago. I'm thinking about following him to his new practice!

[FlissFloss in reply to FlissFloss]

I am ok by the way! Just frustrated! Thank you for your kindness and support x

[Tillyray in reply to FlissFloss]

Yes definitely join the new practice if you can.Having a good, supportive GP is one less hurdle🙂..and I'm glad your doing ok. Feel free to message me anytime x

[FlissFloss in reply to Tillyray]

You too x 😀