Arachnoiditis

Hi, my name is Goodluck12. I'm here because I believe I have arachnoiditis. This is probably caused by my major scoliosis surgeries several years ago. Now, I have trouble walking as my legs are very weak. The surgeries have also caused me to have spinal stenosis and I walk bent forward.
I like to know if anybody else have these problems. I would appreciate hearing from you. Thanks.
#MightyTogether

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

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

Hi, my name is jasper63. I'm here because I have Adhesive Arachnoiditis.

#MightyTogether #Arachnoiditis #AdhesiveArachnoiditis

Hello I am new here. I am a caregiver for my husband who has arachnoiditis.

Hi, my name is Newtothejourney. I’m new to The Mighty and look forward to sharing my story.

#MightyTogether #Arachnoiditis

Hi, my name is bartmann. I’m new to The Mighty and look forward to sharing my story.

#MightyTogether #Depression #ChronicIllness #SleepApnea #CentralSleepApnea #BriefPsychoticDisorder #SchizoaffectiveDisorder #DiabetesType2 #HeartDisease #CoronaryHeartDisease #Arachnoiditis

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

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.........

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