Raindrops of Sapphire
Lorna

10 Hypermobile Ehlers Danlos Syndrome Life Hacks

10 Ehlers Danlos Syndrome Symptom Hacks As you know, I was finally diagnosed with Hypermobile Ehlers Danlos Syndrome back in April after a whole life of problems. Getting the answers I needed was such a weight lifted off my shoulders and it’s allowed me to be able to find out more and more things about the condition and help my symptoms. As I suffer from a whole range of symptoms which are associated with EDS (see my post here) I thought it would be a good idea to put a huge article together with tips and tricks on how to combat some of them. A lot of you have asked for more posts on the condition, so I’ve been spending a couple of weeks putting this one together. All of these tips here for each symptom are based off of my own experience, and what I find helps me. In this list you will find: Knee Ache From Cold Overheating, Temperature Regulation & Sweating Swelling Arms Or Legs Digestive Issues Bladder Irritation / Cystitis Subluxing Pain / Joint Pain Migraines, Tension Headaches, Dizziness & POTS Hormone Regulation & Acne Ingrown Hairs & Blisters Chemical Sensitivity Supplements Obviously we are all individual and what works for me might not work for you, but they’re general things I’ve found extremely helpful. I would love for this to be a really comprehensive guide in the future though, so if you have any of your own methods and coping strategies, please comment below! I hope these 10 life hacks are useful! Knee Ache From Cold One thing I regularly get is knee ache. Since…

61 Comments
Share:
Lorna

Hypermobile Ehlers Danlos Syndrome – What It Looks Like

What does Hypermobile Ehlers Danlos Syndrome look like? After announcing that I was recently diagnosed with Hypermobile Ehlers Danlos Syndrome and the support you all gave me, it meant a lot. As I said in that blog post, I didn’t want to include any photos in case nobody wanted to see, but you’ve all been pretty positive and I’ve received a lot of personal messages as well with intrigue, so I thought I would share with you what it looks like. I did want to point out that these are my own personal hypermobility symptoms and I’m aware that every single person in life is different, so every EDS sufferer is going to be different too. I’m aware that some people suffering are a lot worse than me and can’t even keep their joints in, or are confined to a wheelchair, but there’s also a lot with mild symptoms that aren’t too visible. I’m not sure where I would class myself, but if the Beighton Score is accurate, I am 9/9 on that and I would say I’m about a medium level – given the pain. I said before that I’ve always kept any of my hypermobile joints off of the blog because of abuse I’ve received and just from the general feel that they are not nice to look at, but as I’m trying to help others and shed some more light on the condition itself, I’m doing a blog post for you showing you what it looks like on me and how it presents itself in the physical form. I obviously can’t share the internal symptoms as they’re…

69 Comments
Share:
Lorna

Hypermobile Ehlers Danlos Syndrome – Diagnosed

Here goes! I wasn’t sure how to even start with this post as I’ve shared my health journey with you (see previous posts here) for the past few years now. Obviously I have suffered my whole life and have looked at many different avenues to find out what could be wrong, and after 29 years (very nearly 30!) I finally have a diagnosis. It’s been a really long journey and one that’s been incredibly complex and challenging, but I’m hoping now that I might be able to start getting the help I need and be able to live a bit more of an exciting life. So, without making this too long, I will start. I was diagnosed with Hypermobile Ehlers Danlos Syndrome. Hypermobile Ehlers-Danlos syndrome is an inherited connective tissue disorder that is caused by defects in a protein called collagen. It is generally considered the least severe form of Ehlers-Danlos syndrome (EDS) although significant complications can occur. Common symptoms include joint hypermobility, affecting both large (elbows, knees) and small (fingers, toes) joints; soft, smooth skin that may be slightly elastic (stretchy) and bruises easily; and chronic musculoskeletal (muscles and bones) pain. Although hypermobile EDS is thought to be a genetic condition, the exact underlying cause is unknown in most cases, but is often due to a mutation in one of more than a dozen different genes. The specific gene affected determines the specific EDS. Mutations in these genes usually alter the structure, production, or processing of collagen or proteins that interact with collagen. Collagen provides structure and strength to connective tissue. A defect in collagen can weaken connective tissue…

72 Comments
Share:
Lorna

How I Cope With Anxiety & Stress

I start typing, then I delete. I type, then I delete. This is a subject I’ve been procrastinating over sharing in depth for some time as it’s so close to home and personal, but in doing so I am hoping it might act as some kind of therapy or at least lift some of the burden so it’s not something I’m internally struggling with anymore. I’ve briefly touched on the subject a couple of times before and so many of you have reached out to say you’ve been through anxiety riddled points in your life and you were hoping that I would share my story, so here goes… For as long as I can remember, since growing up, I’ve always had anxiety and worried about everything. I don’t know if this is because I’ve had so many long standing health issues since birth and frequenting hospital and having a lot of tests left me scarred and in fear all the time, or if it’s just my nature and the way my brain is wired in the sense that I overthink everything. It’s been a struggle and I remember a lot of nights I would just lie in bed as a kid feeling fear and worrying about everything, not sleeping. These worries were never for myself, but more for the fact that I didn’t know what could be out there, if people or animals were getting hurt, if someone was going to try and hurt my family etc. We lived next to a pub as a child so I was often witness to a lot of fights which were alcohol related…

52 Comments
Share:
Lorna

Tea Time With Tastea Aloha Vera Blend

A Luxurious Aloe Vera Herbal Tea Experience I seldom do blog posts on food and drink as it’s not really an area I share, however that changes when I’m really inspired and into a product that I adore. I recently found out about Tastea at the end of last year and thought the brand’s concept was great. I’ve never been a normal British tea drinker, but I am a fan of herbal tea and different tastes, which is why this brand stood out to me. Tastea was established from a need for natural and homeopathic products (which we all love) as they believe in the power and odours of nature. They specialise in luxurious tea blends, loose and herbal teas which can do something for you and it’s all 100% natural. Just how I like it! The founders and owners of Tastea invented the current tea blends in collaboration with Chinese herb experts, eminent physicians and tea sommeliers. The result is a huge variety of tasty and balanced teas, making something for everyone. A great taste quality is of high importance and is achieved in various ways. One way is by picking the tea in a distinct way – by hand, guaranteeing they only use the best tea leafs for their blends. The great flavour is another way, achieved by drying the tea between orange peels (you can see these in the tea cans), but this allows the tea ingredients to absorb the orange taste, while you can discover the other flavours as well. As you know I have a sensitive stomach and digestive issues, so I went for a…

46 Comments
Share:
Lorna

It’s A Struggle

I know it’s been a little while since I did a health or life update, pretty much 2 months to be exact, and to tell the truth, I wasn’t going to do one as I always thought sharing this stuff was boring and you’d probably get tired of it by now, plus I didn’t want to sound like I needed people to feel sorry for me or that I was moaning about life. I know there are people out there that are much worse off than I am, as well as people who are full of health, but I also know that there’s no competition when it comes to health as we’re all entirely different and we experience things in our own way, so while one thing might seem trivial to someone else, it could be a mountain for another to climb. I’ve asked on my IG stories (it’s easy to use the 24 hour poll there) twice now about these types of posts and the last poll won by a landslide when asked if you wanted more health updates (it was around 80% yes), so that’s what I’m doing for you now. If you do want to read my previous health posts, click here. As I’m always open and honest with all of you, I’m not going to lie. These last few months have been a struggle. Often at times I feel like I’m failing and I’m going to have to quit blogging because I can’t give it the dedication it needs as it’s 24/7 (gosh knows how I would live then), but when I was watching one of…

46 Comments
Share:
Lorna

Health Update – Where I Am At Now

I know back in August, I shared with you this health update post (click here) and so many of you were incredibly supportive and helpful, giving me advice via email and private messages, as well as through the comments section and I was overwhelmed by your kindness and how much you all cared. I remember when I first started this blog and I never shared any personal information or even came out about my illnesses until a couple of years ago, after I had been blogging for years. So it’s really nice to know how supportive you all are and if I can help anyone else along the way who might be suffering the same problems, that’s even better. So, where am I at now? Gastroenterologist – I mentioned before that I had been to see the gastroenterologist and we had done a SIBO test which had come back negative for hydrogen, however I found out a little while after all of that that I did have excess bacteria in my small intestine which produces lots of methane. Even if I don’t eat, my baseline methane production is above what it should be, which was causing a lot of gas and bloating as well since that bacteria was producing it on its own. Antibiotics – My doctor said the best antibiotic for me (taking into account other medical issues) would be Rifaximin which I was to take for 14 days at 1100mg a day, so it was quite a high dose. This would then kill off all the bacteria (both good and bad) and then hopefully I can replace it…

40 Comments
Share:
Lorna

An Important Health Update – Any Advice?

It’s been a little while since I shared a health update with you and I’ve definitely been on a journey these past few months. I did two posts a couple of months ago, talking about my food intolerance’s and my leaky gut syndrome, but I’m still no clearer on why I have these issues. My leaky gut was caused by something (and it’s not yeast) and my food intolerance’s happened out of the blue just over 2 years ago. There’s been no answer as to why any of this happened or how to fix the root cause and I’ve seen specialists numerous times, a dietician, I’ve tried remedies to try and heal myself, and I have almost exhausted all resources. I just wanted to give an update on my situation as I know a lot of you ask how I am doing, so I’ve broken it down into parts and a background of what happened, just in case any of you out there are doctors or might have the same experiences, any advice or ideas would be most welcome, please! What happened? In May 2015, I had an acute attack of something that made me have mild sickness and diarrhea, I couldn’t keep any food down or in, and water was a struggle as well. This happened for about a day or two, and I had really bad stomach pain. After this, my small intestine and stomach area between my ribs swelled up huge like I had swallowed a tennis ball, and was burning like lava all the time. Sometimes I was doubled up in pain because I couldn’t stand…

68 Comments
Share:

Where to next?


Looking for Something?