Arachnoiditis

Hi, my name is Chronic2. I'm here because, I’m Blessed that God has given me another Beautiful day to experience life. I suffer from decades of migraines too & feel for you. I think a lot more research needs to be done Re: Migraines & Ehlers Danlos. There are 13 different types of: EDS, & there seems to be a lot of the same symptoms listed for both diagnoses. It’s not until more recently that a few good Dr’s have thought outside the box & realized, that when their patient has been diagnosed with Several Symptoms of: Migraines, CSF Leaks out of my nose (3 failed attempts to seal it), TMJD, Fibromyalgia, COPD( never smoked or drank), cardiac issues, Peripheral Vascular Disease, a detached & convoluted large intestine, GERD, Schatzkes Ring, IBS, Carpal & Tarsal Tunnel Syndrome, Arthritis, Double Jointed & hyperextension of joints, neck, shoulders, back, hips, knees, elbows, ankles, hands & feet pain, Arachnoiditis, RLS, & a whole lot of Pain, etc.
I am wondering if there’s anyone with Ehlers that can relate to me? Did you ever have a DNA test done to confirm your Diagnosis? I am 63 now & it’s taken up until now for, not my PCP, but for my Cardiologist to suspect EDS. (I also have SVT, A-Fib., Mobitz, Paroxymal contractions, a bovine chest, & Bicuspid Heart). My Cardiologist recently did a DNA test on me that came up with these Results: an Unknown Significant Variant gene marker called, p.R440H (c.1319G>A) in the COL1A2gene. He told me that he did not know exactly what that means, & said he wanted me to see a Geneticist. When I asked him who he recommends? He said, that he did Not know of any, or where to refer me? I’m Thankful he did the test, but thought to myself? Then why did he know to do the test, if he didn’t know how to Interpret it? I went home & googled, Geneticists near me. My Dr was right And the nearest one that came up is in California!
I happen to live in Illinois. It’s a Long trip from home. Anyone have any ideas on this? Unfortunately, I guess we have to be our own Patient Advocates these days more than ever! It Appears to be an, out of the ordinary box that Drs apparently can make money charging for, but can’t deliver! It’s so frustrating sometimes. Feels like it’s better to leave the box unopened on a shelf! Have to see my Neuro. Dr. for 31 Botox shots to Treat my Shattering Migraine! Thanks for letting me vent! Thank you & have a Wonderful day. Sincerely

#MightyTogether #Migraine #Fibromyalgia

Hi, I'm Julie. I'm a writer, a retiree, and someone who has been diagnosed with adhesive arachnoiditis. I'm looking for ways to increase public awareness and to find community.
#Arachnoiditis #ChronicPain #RareDisease #spinesurgery

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