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A New Diagnosis

After weeks and weeks of leg and hip pain and some blood tests, yesterday my GP diagnosed me with Arthritis that’s associated with my joint hypermobility (Ehler’s Danlos Syndrome) I’ve just gotta have an x-ray of my pelvis to make sure the bone hasn’t been damaged from the constant grinding feeling in my hip joint when I move my leg, etc.

I’ve been prescribed some kick ass anti-inflammatory medication called Meloxicam and it’s really helping! I managed to tidy my room up and get a nice hot shower (which definitely helped my back and hip). So, now I’m gonna maybe make a cup of hot chocolate and relax while playing WoW.

(Yes, I’m aware my hair looks awful - I’m trying to grow it out so I’m back to my natural colour).

I wish you all a very Happy New Year! 🥳

#chronicillnesswarrior #ChronicPain #POTS #PosturalOrthostaticTachycardiaSyndrome #EDS #EhlersDanlosSyndrome #LiverDisease #NAFLD #BorderlinePersonalityDisorder #BPD #InterstitialCystitis #ic #Diabetes #Migraines #Arthritis #Jointpain #NewYearsEve #Happynewyear

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Since you all loved the photo of him the other day… I present - Loki being cute.

As I said, you all loved my beautiful Loki the other day. Today, he’s been curling up around my feet cus my blanket was too warm for him. I’m feeling much better today - the antibiotics have done their job, as have the heavy painkillers.

Thank you all for wishing me well. I hope you all have a fantastic and easy week ahead of you!

#chronicillnesswarrior #POTS #EDS #NAFLD #LiverDisease #Diabetes #Migraines #InterstitialCystitis #ic #bladderdisease #BladderPain #ChronicPain #Kidneyinfection

14 reactions 3 comments

Infections and Insomnia

Hey, everyone. I hope you're all doing well!

I just had a question to ask...

So, from 14th April and up til today, I had a raging sinus infection. My eyes were so swollen, and you could actually SEE my sinuses above and around my eyebrows and eyes. My whole face ached so fiercely and I often ended up in tears because of it. Which made things so much worse.

At night time, I'd crawl into bed at 9pm and according to my mother, I was asleep within minutes (she could hear me snoring faintly). Which is very weird, because I have pretty bad insomnia. It normally takes me hours to fall asleep and even then I usually end up having to get up to pee multiple times.

This isn't the first time my body has done this. Nine years ago I developed a very serious case of tonsillitis. My GP called an ambulance because my fever was at degrees centigrade. For the entire of the ambulance ride I was drifting in and out of consciousness and by the time we arrived at the hospital, I started having seizures because my fever was so high. I don't remember any of this - I was so out of it. I had to stay in the hospital for two weeks, and for about 90% of my stay there, I was asleep.

This now happens every single time I get an infection. Doesn't matter what type, though. It could be a UTI, laryngitis, chest infection, winter vomiting bug, etc. It's like it knocks me out.

So, I guess my question is... Does anyone else have experiences like this? I'd love to know how you handle it and whatnot.

Have a great day, everyone!

#posturalorthostatictachycardia #POTS #POTSUK #EhlersDanlos #EDS #ChronicPain #chronicillnesswarrior #NAFLD #LiverDisease #IBS #BPD #InterstitialCystitis #ic #Migraines #Diabetes #Infection #Insomnia #jointhypermobility #Advice

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Interstitial cystitis #ic

Does anybody have any flare up tips for IC? Im newly diagnosed and looking for some tips on how to alleviate some of the symptoms even a little. #InterstitialCystitis #Flareup #ic

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Frustrated and defeated

I left my my narcissistic husband of 15 years and am currently in the process of divorce. I have 2 teenage daughters from a previous marriage and he has a teenage son from a previous relationship. We share a son that is 13 and that is the part that I’m struggling with. Over the past year and a half my son has started becoming more difficult. He has ADHD and has began acting in the same narcissistic way his dad does. He makes constant comments about how much better he is than everyone else and is very blunt about being sexist and stating that women are useless unless they are in the kitchen. I have tried many times to talk to him to explain that his behaviors and words are wrong and hurtful but he doesn’t listen and will just say that he doesn’t care because that’s just the type of guy he is and I just need to get used to it. When he says something really nasty and I get extremely angry he will do just like his dad and swear it was just a joke that I don’t understand because I lack a sense of humor. When his ADHD kicks in really bad, he tries to harass me physically by blowing his breathe in my face or ear, poking me with his finger or other objects like his fake sword and when I say to stop he just laughs and says “make me! You know you won’t cause your just a weak woman”. Last night he started trying to pop a t-shirt at my face while I was working on my computer doing an assignment for my online class. I told him to stop, but he did it again and popped me directly in my left eye. He seemed shocked at first that he actually hit me, but then started making a joke out of it and told me that it wasn’t his fault I got hit, it was my fault cause I didn’t dodge it. I am totally at my wits end. I left my husband so I could get away from his abuse and now I’m living with my son treating me the same way. I don’t know what to do to get my son to see that his behavior is unacceptable and wrong. Any advice would be greatly appreciated cause I don’t have anyone else that I can talk to about this. #ChronicFatigue #Fibromyalgia #ADHD #IBS #DegenerativeDiscDisease #Depression #Anxiety #ic #Migraine #imbroken

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Running Through the Flames (poem)

The pain within me

It coils within and within

Where am I now?

It hurts, it hurts so

The pain is clouding my thoughts.

Where am I now?

Where am I to go?

I feel so lost and yet I

cannot go there yet.

Running through the fire

On and on I go and I'm

Running through the fire

#InterstitialCystitis #ic #ChronicPain #icwarrior #warrior #


Prayers are being answered!!🙏🏻 One step closer to freedom!! 🥳

Just wanted to give an update. By the grace of God, my daughter and myself have both been offered positions at the company we were hoping to get hired by! The best part is that we will be able to work the same shift and the job itself is within our range of physical ability!!! With employment just around the corner, I am one step closer to being able to leave my current, bad situation!
Thanks to everyone that “❤️” my previous post to show support. I really appreciate it! #Fibromyalgia #MyalgicEncephalomyelitis #Migraine #EosinophilicEsophagitis #IrritableBowelSyndromeIBS #Dysautonomia #BorderlinePersonalityDisorder #ic #hypermobileehlers-DanlosSyndrome(hEDS) #DegenerativeDiscDisease #amps #FoodAllergies #fragranceallergies #NarcissisticAbuse #Hope #freedom

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Advice for stopping Savella

Does anyone have any suggestions for how I should go about tapering off of Savella? I tried contacting my doctor but haven’t heard back. I’m having some symptoms that I don’t like and I’m thinking they could be caused from the Savella. I looked online for suggestions and all I could find was that it’s important to taper slowly and not to stop cold-turkey. However I could really use more specific advice for how to taper the dose safely. I’m currently taking the max dose of 200mg/per day (100mg in morning and 100mg at bedtime). If anyone else has had to stop this medication, your input on how you went about it, will be greatly appreciated.
#Fibromyalgia #ME /CFS #Migraine #IBS #ic #Nervedamage #DegenerativeDiscDisease #FoodAllergies #fragranceallergies #KidneyStones #spinalmass #Depression #sensorysensitivities