Arachnoiditis

Join the Conversation on
Arachnoiditis
507 people
0 stories
60 posts
About Arachnoiditis
Explore Our Newsletters
What's New in Arachnoiditis
All
Stories
Posts
Videos
Latest
Trending
Post

Arachnoiditis newbie !

Hi ya I’m new on here. So glad I’ve found this site. I always try reaching out to people regarding arachnidoiditis but because it’s a painful disease people aren’t in no fit state to reply 🥺 which I totally get 💕
Alittle history of my injury-
I have arach from an epidural in labour, CSF leak gave me Arach over the 18 months I was leaking for.

I have had stem cell therapy in arioza my symptoms have got better, it’s still early days (3 months) but have high hopes I will heal alittle more. 🙏🏻
Can give details if anyone needs!

I just wanted to ask if anyone knew of a Pilates teacher in London or yoga ?
Also I’m thinking of a holiday next Aug to Dubai, the last flight was horrendous is there anything I can do prior to make it more easy on nerves ?
I have tried to get a cruise but no luck from London -Dubai.

Would really appreciate any advice

Thank you….

MICHELLE X

Post

I’m new here!

Hi, my name is Shelly. I'm here because I have arachnoidtis from a CSF leak in the birth of my baby last year. It all started from a Epidural (don’t have them)

#MightyTogether #Arachnoiditis

1 reaction 3 comments
Post

How people with an invisible disease feel

My favorite quote from my doctor was, “it can’t really be that bad if you are still working and doing everything you do. “ I told him I didn’t know I had a choice. 🤷🏾‍♂️
Years in pain, tired and the many changes in me for no reason or apparent reason ... Hiding everything from someone else, pretending to be doing better than you are; until it no longer works. No matter how strong you want to be.
Then the moment comes when they tell you what you have ... You have mixed feelings: you finally know what you have, but how do you deal with it?
Lack of encouragement, wanting to lie down, taking medication frequently; having a whole pharmacy on top of the nightstand.
Then, the daily responses, "Why did you get so fat?" “I have this great diet, if you just go out and exercised.
That once beautiful hair of yours now awful and it falls out.
What happened to you??....
This is all true and that's why I'm sharing it!
Silent and invisible diseases do exist ...
When you have an invisible disease it is difficult to argue from your perspective with ignorant people.
Life takes a lot of turns !!!
Tired of being told:
* Did you go to the doctor?
* Have you tried this?
* Have you tried that?
* I don’t know what else we can do for you...
Yes! I tried and still try everything !!!
Doctors say this disease is forever. That I will not heal. However, I am not giving up, but I want to make others realize:
* A nap will not cure me but it will help me ...
* I am not lazy, I take medication and it sometimes makes me sleepy.
* I am not angry but sometimes cranky with pain.
* I struggle daily with pain, mobility problems, fatigue, the criticism of my environment.
Most frustratingly, people look at me and say, "It can't be that bad; you look good "
Despite the fact that my body is experiencing excruciating pain everywhere, of course I look good, I always try to look good, it is an "invisible" disease.
This disease affects me physically, mentally and emotionally. Because rare autoimmune diseases cannot be seen, but we feel them.
And they are there ... Silent attack but extra painful.
I am looking at those who take the time to read this post to the end.
The following request is sent to the post:
Please, for me and in honour of someone who fights against:
-Crohn’s Disease
-Addisons Disease
-Hashimotos Disease
-Graves Disease
-FND
-Depression
-Anxiety
-Autoimmune disease
-Sjogrens syndrome
-Polycystic ovary syndrome.
-Rheumatoid arthritis.
-Chronic pain
-Endometriosis.
-Multiple sclerosis.
-Myasthenia gravis.
-Pulmonary hypertension.
-Chronic fatigue syndrome.
-Diabetes
-Fibromyalgia.
-Raynaud and Scleroderma.
-Lupus.
-Neuralgia of the trigeminal
-Epilepsy
-MS
-Cancer
-Hyperthyroidism
-IgA Nephrothapy
-Arachnoiditis
-NEAD
-Vasculitis
-Ulcerative Colitis
or some other disease you don't see.
Copy and paste.
#Fibromyaliga #SpinalStenosis #Asthma #chronic fatigue #Pain

13 comments
Post

Stand up but don’t give up

Wrote this recently. Wondering if you relate??

To those suffering with Autoimmune Disease, Rheumatic Disease, Chronic Disease/Illness and Pain. You have probably felt this way too many times when seeing a GP or Specialists. They say you look too good, you’re not sick enough and not in enough pain. If you don’t look good, you’re not trying hard enough or your pain can’t be too bad.

Be you, do you and if you get treated badly don’t get sad, angry or frustrated in front of them. Yeah, secretly you can yell, scream and cry. But first, just get up like the Warrior you are, walk out the door and go to the next doctor who listens and treats you the way you deserve.

It’s not an easy journey, and there will be many walk out moments. You will suffer physically, mentally and emotionally. If you’re lucky, a diagnosis may come quickly but in reality it can take years before you get the right diagnosis. In the end you will never be the same in so many ways, especially physically. However, you will learn to accept your new life and make peace with the disease that took so much away from you. You will be amazed looking back on how much you have learnt and grown since the beginning of your journey. Your new found strength, determination and courage made you the Warrior you now are. (Written by: Charmaine Innes from the Mighty App)

Why YOU ARE a Warrior

Your fighting a war you cannot see with you body everyday. You are constantly faced with challenges and obstacles. Brave, strong, fearless fighter you possess the determination, courage and inner strength to fight a fight you didn’t ask for, or through no fault of your own.

Because so often, getting through the day requires a fight. A fight for treatment, a fight for understanding from friends and family, a fight to keep up with the demands of work, life or parenting and a fight to complete every day tasks people take for granted. Every day life can feel like a daily battle when you have a Chronic Illness/Pain, Rare Disease, Rheumatic Disease, Autoimmune Disease and Mental Health. (Written by: Erin Migdol from The Mighty App)

In honour of someone who is fighting Chemically Induced Adhesive Arachnoiditis, Adhesive Arachnoiditis and Arachnoiditis, Rheumatoid Arthritis, POTS, MCAD, Sjogren's, Scleroderma, Hashimoto Disease, Ankylosing Spondylitis, Fibromyalgia, Lupus, Sarcoidosis, Hepatitis, Raynauld's Syndrome, Diabetes, Mold Illness, Celiac, CROHN’S, Ulcerative Colitis, Pemphigus, SPS, MS, PBC, Psoriatic Arthritis, CIDP, MMN And GPA.........

1 comment
Post

Anxious

I’ve got Arachnoiditis and Arthritis and I’ve been self isolating for the past two weeks. Stress makes my condition worse so my pain has been through the roof. Worrying about what happens if I can’t get my meds, one of them is MST (morphine sulphate tartar) and I would suffer withdrawal symptoms, how are you coping? ##scared #Anxiety

3 comments
Post

Waiting for the dawn in holy terror

Waiting for the morning to come #covid 19 #testing #rarechron

I’m sitting here on day 3 of feeling like crap. I’m sitting here on day five after the unexpected visit of one of my kids. I’m sitting here with my youngest and our two cats and I’m effing terrified.

Five days ago one of the older kids popped over. They brought their new significant other to meet me. I kept asking about health safety and social distancing. I did a rewind repeat for the entire 30 minutes.

This kiddo lives in a county that has positive testing for covid 19. Every question was an affirmation they had NOT been around anyone sick. That those they’ve been around were fine or tested negative. Before leaving said child wanted a hug. I mean it’s my kid i didn’t

stop

to

think

about

it

!!

Kiddo kept saying nothing no symptoms… Not sick…Nothing to worry about. Sigh. Until today. I’ve been getting progressively worse and my youngest is now starting.

I wrote my other child and asked point blank ARE YOU …HAVE YOU…TESTED POSITIVE. HAD ANY SYMPTOMS…HOW LONG.

Weeks now. For weeks! A dry cough coming and going. Other symptoms and had not tried to get tested…but is going around out in public and visiting.

Now let me tell you why I’m scared out of my effing mind! My youngest has cyclic vomiting syndrome with aura migraines and abdominal migraines and since becoming a teen the cvs has morphed (like it did with so many) into a beast that isn’t all about puking. Its all about so many other symptoms that have become so strong it’s a vengeance. My youngest child fits the definition of medically fragile.

Let me tell you part two of this. I have Arachnoiditis/8 herniated discs/fibro/multiple other pain conditions/ high blood pressure/a family history of heart disease and cancer/diabetes/like my kiddo asthma/cluster migraines… I could keep going. I fit the definition of medically fragile.

I break this 3rd part like a defeated pinata. We are alone. No vehicle. No friends available near us. No family within an hour plus ride. Two cats that need care. One is old and partly blind. The other is still a tiny kitten. Our hospital with the only er in an hour’s drive CLOSED last Monday!! There is nothing near by for emergencies. There is no one that can take care of our cats take care of my youngest take care and be able to bring us home if one or both of us gets admitted to the nearest hospital.

IF you don’t have to go to work then STAY THE HADES HOME!!! You don’t know what kind of havoc you will cause by “visiting” people…especially the elderly the disabled the vulnerable!!! If you must go near these kinds of people DON’T touch them!!

I’m terrified and were calling the dr tomm to request a teleconference appointment. Could be nothing…could be covid 19. We are the at risk population. We were lied to by a loved one who knew they had symptoms and came over anyway.

I own part of it cause it’s my kid we let them in and i hugged em. However on their end doing this and knowing is tantamount to something seriously freaking wrong!!

6 comments