I've convinced myself I have an incurable progressive and debilitating disease....

[MSNURSE]

Hi all,

I have suffered with anxiety in the past, and I feel like what I am going through right now is beyond anxiety but full on postpartum panic/psychosis almost at this point. I recently had a baby via c-section this September. While pregnant, I always feared epidurals, I never liked the idea of anything going in my spine and I said to myself I will never get one. Well, the pain of labor was literally unbearable so I ended up getting the epidural, was stressed about it the whole time it was in and couldn't stop worrying about if I moved a certain way I would cause damage etc....

Fast forward a few days later to when I got home from the hospital, I had crushing upper back pain that radiated to my chest (this sensation would come and go for a few days), I felt nauseous, chills, and was exhausted. My primary didn't know what was causing the upper back pain so he referred me to a neurologist saying that it might be from the epidural! Since then I have gone out of my mind with anxiety, depression, and obsessing. I did make an appointment with a neurologist who did a lumbar MRI (where epidural was placed) and cervical MRI which both came back normal. The back pain eventually went away and is gone now.

HOWEVER:After my primary mentioned that the upper back pain may have been related to the epidural (even though the epidural was placed in my lower back) I have been obsessing and did some searching on google about what it could have been I came across a disease cause arachnoiditis which can be caused by epidural injections.... ever since finding this online I have experienced each and every symptom that it entails and I have convinced myself that I have this disease. The neurologist also ordered a brain MRI & nerve conduction studies to rule it out and the results came back normal.

I have been miserable and am convinced the doctor is wrong and that I have this horrible disease that only gets worse over time with no cure. I am panicked that I will have endless pain. Right now the only pain I have is burning sensation in buttocks that comes and goes, twitching in random parts of my body which come rarely or with increased exercise, and I'll wake up from sleeping feeling like my skin is burning all over but feels cool to touch. I cannot function normally, I spend all day every day googling arachnoiditis symptoms and every time I see something that I have experienced my face gets flushed and I feel very hot from anxiety. I feel my body burning all day long.

Symptoms of arachnoiditis:

• Tingling, numbness, or weakness in the legs (don't have this, althought my legs seem to fall asleep easier when I'm sitting cross legged)
• Bizarre sensations such as insects crawling on the skin or water trickling down the leg (I thought I felt water on my leg a few times, no insect feelings)
• Severe shooting pain (which some liken to an electric shock sensation) (I don't have severe shooting pain but I sometimes think I feel little zaps on certain parts of my body)
• Muscle cramps, spasms, and uncontrollable twitching (No muscle cramps or spasms but I have started having twitching on different parts of my body)
• Bladder, bowel, and/or sexual dysfunction (I can't really tell when my bladder is full like I used to but I'm not sure if that is from the c-section or not, I've been having diarrhea, and sexually I have trouble getting aroused but can achieve orgasm still)
• Chronic severe pain is mostly localized in the lower back, perineum, legs and feet; it may appear weeks after a spinal surgical intervention or an injection into the neuroaxis that went astray.(No pain in lower back, perineum, legs or feet, although the symptoms I DO have appeared weeks after the epidural which is why this statement worries me)
• Arachnoiditis can create extensive scarring of the meninges, which can lead to a debilitating, constant burning pain usually mixed with sharp, stabbing pains. It occurs mainly in the limbs and lower back, but can spread up the spine and through the arms (The BURNING part of this statement makes me worry because I have burning pain in both buttocks (sometimes one, sometimes both- could it be sciatica or nerve damage from arachnoiditis???) and a few nights I wake up and my body feels like its burning inside but its cool to touch.)

I'm a wreck and I am convinced I have this disease even though the Dr tells me its highly unlikely based on the results of the test. I also realize while googling that sometimes doctors misdiagnose arachnoiditis because it is rare. I am convinced he is wrong and I have it and I can't function!

Someone please tell me if the symptoms I have are anxiety related and if any of you have experienced these feelings during anxiety/panic/stress:
-Twitching all over randomly (rarely they come and go a few times a day)
-Burning sensation on face, palms of hand and sometimes entire body feels like it's on fire but is cool to touch (NO SWEATING, NO WARM OR FLUSHED SKIN)*
-No appetite
-Deep burning in buttocks that comes and goes? Could this be sciatica?
-Extreme depression

My psychiatrist basically thinks that I am making myself feel these things from postpartum depression as does my husband, who says it's all in my head and that the anxiety is causing symptoms that I think are related to this disease which in fact are common in a million other diseases but I am only dwelling on this one because of the epidural...

Any advice would be so helpful. Please!!!!

[dontcarewhatusernameis]

I have gotten twitches before and it does seem to happen more often when I have increased anxiety. Depression and loss of appetite also can easily be caused by the anxiety. How can you not be depressed when you are constantly stressed out, worried, and feel like crap. Appetite changes are a common depression symptom. I also get a burning sensation in my face sometimes with bad anxiety (it actually will turn red sometimes) so it likely is from anxiety also.

I read the following about arachnoiditis on webmd "There is no cure for arachnoiditis. Treatment options for arachnoiditis are similar to those for other chronic pain conditions.". As hard as it may be to do I would try to stop worrying about it. Whether you have it or not you will be in the same situation as there is no cure. However if it is being caused by the anxiety it should get better if you stop thinking about it so much.

It could also be caused by something else entirely so I won't tell you to completely give up researching what it could be if you really think its not anxiety related. You did say you were worried about the epidural causing damage even before you had it though so it seems more likely it is anxiety related to me. I have no idea what the odds of a epidural causing your symptoms are though so its hard to say what the likelihood that its anxiety related is. You might want to research that some. It might make you feel better if its extremely rare and considering how stressed out you are about it I doubt it would make you feel much worse even if it is sort of common.

I think a good first step would be to try to stop googling about arachnoiditis all the time. If you want to research other possible causes go for it but try not to spend all day doing it. I know it likely won't be easy but try to find sometime else to do with your time to replace the time you spend researching this stuff. Maybe binge watch a show on netflix or something?

I don't know what if any drugs you are on but some benzodiazepines might help you out some over the short term if your not already on them. Just don't over do it with them or you may have even more problems.

Hope you start feeling better soon.

[FruitSalad]

For a different perspective you could go to RAWFIGS website and google anxiety. I had many of those symptoms. From my perspective "Anxiety" is a blanket term, not a cause. My cause was my body, the feeling was anxiety. For me I was in complete acidosis, with some major issues. Just another perspective for you -- more physical. PM me if you need info.

[MrsMinx]

I believe you are anxious. Lets look at THE FACTS:

1) You acknowledged that the pain is in your upper back although the epidural is performed in the lower back
2) "The neurologist ordered a brain MRI & nerve conduction studies to rule it out and the results came back normal." (Praise God)
3) You do not have most of the symptoms of arachnoiditis
4) The symptoms you are experiencing (twitching, no appetite etc) are VERY much indicators of anxiety. Remember Anxiety and Depression are the flip side of the same coin. All that changes is the percentage of one to the other. So you may be experiencing stronger anxiety 70% couple with depression 30% etc. Nontheless, you will experience both of them at the same time.

I would continue with sessions with the Counsellor (on a regular basis)who will likely start you on a course of medication to build your serotonin levels back up. This is a very slow process so don't expect any quick fixes.
During this time, try to relax- get in to a routine and maintain it daily for a while.
Go for a walk daily-no strenuous exercise.
Stay away from sugary foods which can exacerbate your emotions
eat small and frequent meals- a piece of fruit, an egg, something that is palatable
Pray and listen to an audio Bible- This is very soothing and has a great calming effect
Start a journal of giving Thanks
God Bless

[Dahila]

MrsMinx nice post but the end is kind of disappointing. Very good advice and it seems that you know what you are talking about. But praying leave for different place, It is a huge trigger for some people here. Please, and thank ou.
MSNurse http://anxietyforum.net/forum/showth...ptoms-The-List
Long list of anxiety symptoms, people have a lot of it. You have health anxiety, so do I,
Probably 99% of people here have the same problem; health anxiety is a b*** takes so much from us. Please read the list, you will see that you are not alone.........

[MSNURSE]

About a week after my original post I went to the ED because of horrible burning pain in the right buttock/sciatic area. Upon arrival to the ED I explained all my physical symptoms which I have listed in the original post. I voiced my concern about arachnoiditis and they were concerned for MS so they did an MRI of brain and spine which showed a few inactive lesions on the brain and a bulging disc in the neck but other than that nothing else. They also did a spinal tap to completely rule out MS and check for any signs of inflammation that may not be visible on MRI. The spinal tap results showed slight increase in protein which is indicative of inflammation.

I asked what this actually meant and the neurologist mentioned "aseptic meningitis" & compared it to a punch and a bruise: epidural being the punch and inflammation being the bruise and that it will go away on its own over time. He couldn't tell me what was causing all my other symptoms such as the twitching and burning etc. I received 3 days of IV steroids for said"inflammation" in the hospital.A week after discharge my spinal headache from the tap hadn't gone away so another neurologist I had seen outpatient told me to go to the ER again for an epidural blood patch, where they inject your own blood into your spine to seal up the hole left from the spinal tap procedure. Obviously I was cautious of this but got it anyway because a spinal headache is horrific and the blood patch immediately fixed the headache but caused some lower back discomfort which they said was expected.

The neuro doc said the MRI shows no evidence of arachnoiditis which is also what the other neurologist said from the previous MRI. I'm afraid that with the spinal tap showing inflammation it really is arachnoiditis but that the Drs will not admit that it is that due to the epidural for fear of legal reasons. I had seen online somewhere that increase in spinal fluid protein means inflammation which could be indicative of arachnoiditis.

I have been recently seeing a therapist and I've been on antidepressants ever since along with gabapentin which is a nerve pain medication prescribed by the neurologist. The burning sensation is gone, the twitching still comes but rarely. I have lower and upper back pain, and I still can't feel when my bladder is full and when I do go to the bathroom it takes a while for anything to start coming out. I occasionally feel little zapping sensations along my spine and in other parts of my body still and sometimes little dots of a cold feeling in different parts of my body. I also notice this sizzling noise in the back of my neck once in a while which the neurologist has never heard of. This all had been ruining my life. I can't even enjoy my child. I don't enjoy anything I used to anymore.

I'm done going to doctors as they all tell me the same thing: that I don't have arachnoiditis based on all my results. My psychiatrist thinks it's postpartum depression/hypochondriacal behavior. Upon discharge from the hospital the neurologist didn't want to discharge me until I spoke to the psychiatrist on duty because I was hysterical crying, and when the psych Dr came and spoke to me she asked my mother who was visiting if I had a history of beings a hypochondriac.

I was fine emotionally until I started feeling these physical symptoms. I forgot to
Mention I am an RN and I don't know if knowledge of medicine is making me even crazier or if I am actually trying to diagnose myself.

Any advice on how to deal with these physical symptoms? I want and have to move on with my life. Please any advise or kind words would be greatly appreciated.

[MSNURSE]

I believe you are anxious. Lets look at THE FACTS:

1) You acknowledged that the pain is in your upper back although the epidural is performed in the lower back
2) "The neurologist ordered a brain MRI & nerve conduction studies to rule it out and the results came back normal." (Praise God)
3) You do not have most of the symptoms of arachnoiditis
4) The symptoms you are experiencing (twitching, no appetite etc) are VERY much indicators of anxiety. Remember Anxiety and Depression are the flip side of the same coin. All that changes is the percentage of one to the other. So you may be experiencing stronger anxiety 70% couple with depression 30% etc. Nontheless, you will experience both of them at the same time.

I would continue with sessions with the Counsellor (on a regular basis)who will likely start you on a course of medication to build your serotonin levels back up. This is a very slow process so don't expect any quick fixes.
During this time, try to relax- get in to a routine and maintain it daily for a while.
Go for a walk daily-no strenuous exercise.
Stay away from sugary foods which can exacerbate your emotions
eat small and frequent meals- a piece of fruit, an egg, something that is palatable
Pray and listen to an audio Bible- This is very soothing and has a great calming effect
Start a journal of giving Thanks
God Bless

Thank you- can you please read my latest reply on this post and tell me what you think? It would be greatly appreciated!

[Anne1221]

So if your psychiatrist (whom you are paying) is saying to you that you are making yourself feel these things, how is he going to treat you to feel better and get out of this? That's his job. I never leave my psychiatrist's office without feeling a huge sense of relief.

[MSNURSE]

So if your psychiatrist (whom you are paying) is saying to you that you are making yourself feel these things, how is he going to treat you to feel better and get out of this? That's his job. I never leave my psychiatrist's office without feeling a huge sense of relief.

My Husband and family also think its all in my head only because the MRI's and nerve tests came back negative. They also believe the neurologist when he says the inflammation will go away but I think it is permanent damage. They tell me I am not a doctor... ect. As for my psychiatrist he has gotten the results from all these neurologists and doctors and since the only thing was the inflammation from the spinal tap he thinks I am blowing it way out of proportion. Since he started me on lexapro the burning sensation has stopped and the twitching has slowed down significantly which is why he thinks its psychosomatic.... I think its a coincidence.

[kkleco]

I am going through the SAME exact thing, in fact I JUST posted something similar but way short---- I have had 2 epidurals as I have 2 kids...
I think we are overcome with anxiety. After reading everything you wrote I am almost 100% we are having anxiety attacks... I am serious, I just had a CT scan on upper and lower abdomen and it was normal. I have not done all the other stuff but you are not alone with this.
Personal message me if you want to chat more on it.