Here’s my story:

APRIL –Took a long walk- 3 miles with 30 lb son in backpack. This after a period of being relatively inactive, had not been to the gym for several years, but I have fairly active job (work in stockroom for a manufacturing company) I notice my lower back is very sore and attribute it to a horrible flu that the whole family and workplace has (high fever, cough, body aches etc) notice horrible back pain whenever I cough or sneeze. The flu gets better but the back pain never really goes away 100%, I notice it when I am sitting and after walking a lot. I don’t visit the dr for it though. Reminds me of several years ago when I fell down and cracked my tailbone, several months/years of pain, told nothing could be done to “fix” it.
May-July –I have a few bouts of sciatica pain in my right side.. something that bothered me with both pregnancies. Back still hurts on and off.

July- Lifted sleeping child to carry up the stairs and felt something “pop” in lower back. Was in pain all night with spasms in back and down both legs. Go into ER next am, told it was likely a herniated disc and follow up with Primary Dr. Follow up with Dr and sure enough MRI reveals small herniation L5-S1 pressing on right siatic nerve. Told it would likely get better with PT. Start PT twice a week. Taking Tramadol ER 300 mg once daily and vicoden for pain. Have some good days pain gets better-barely noticeable don’t have to take meds –some bad days pain wise and back feeling so weak and do need to take meds. Am supposed to be on “light duty” at work.

Aug. 16 Had some sort of long-lasting Panic attack. Started around 12:45 pm as I lay down to go to sleep. Heart pounding, burning in chest, feeling like I was dying, etc,etc. Never experienced this out of the blue before. Went to hospital and everything okay just fast heartbeat 130 bpm. Slowly started to calm down and feel better. Was given Ativan and sent home around 3:30-4 am. I am convinced at this time that my pain meds and caffeine habit caused the “panic attack” and quit everything including smoking. Have two more episodes of chest pain follow up with PD and prescribed Atvian and an SSRI which I take only once. Start taking 1mg Ativan daily because I am feeling like a constant panic attack is coming on. Back pain still bothering me so I am referred to pain clinic for an Epidural steroid injection. No more palpitations just chest pain.

Aug 22, a Friday- Epidural steroid injection of celustone and licodane done with fluoroscopy at L5-si and go home and rest. Have to take pain meds again afterwards Wake up in am feeling great. Not much pain- feel like being active. Go bike riding on Sat. Back pain is much better
Sunday-wake up feeling like pulse is racing. Tons of energy. BP which is usually normal is up to 137/85. Call clinic and ask if this is normal, told yes and could last for a bit. A bit turns out to be all week with chest pain, increased bp 147/90 and constant hr of 86 bpm. Tingling in right arm and hand. Go to urgent care and told “this is your “panic” acting up, you need to be on an SSRI. Call pain clinic back and ask if this is still normal they say yes, take Ativan try to relax and let it go. A horrible depression sets in, feel horribly sad and like crying every minute. This goes on all week. Taking 1 to 1.5 mg ativan daily plus Iprofen for back.

Saturday morning Aug 30 I notice heart is not beating as fast and blood pressure is normal. Start to notice my legs muscles are constantly spasming/ twitching. But not feeling so bad as last week. Depression eases up. Twitching continues and back pain returns worse then before Epidural steroid injection. Both sides, not just right. Stop taking atvian. Go into Dr for increased back pain. He notices I do have increased spasming in both legs Say to take flexeril and start on oral steroids. NO way am I going to go on more steroids after the worst week of my life. Start taking Iprofen 600 2-3 times a day, asprin and Tylenol. Start losing faith in Dr’s and pills. Back hurts worse then ever now. Muscles in back and both legs constantly twitching. I stop going to PT . Blood work shows slightly low potassium so I increase my bananas,etc and my level goes back to normal but twitching stays. All other blood work is normal. I feel shakey all over constantly, hands shake 24/7.

One week later Sept 5. Go back to Primary dr for increased back pain, constant spasming, twitching, tingling in hands and feet,stiff sore neck, feels like my head is heavy, low grade fever. Start to get tunnel vision and have trouble concentrating She tells me this is all part of my anxiety and to start taking an SSRI. First dose of SSRI brings on a horrible headache, had to go to ER. I notice increased spots and floaters in my left eye and go to eye dr. They find nothing wrong. I notice at times I feel like I can’t take a deep breath but attribute it to my “anxiety”. No more chest pain so that is a good thing.

Next week, after another headache, feels like it hurts to hold my head up and a band is being wrapped around my head. I go back into Primary dr. She refers me to Neuro. I go to see him on Sept 19th. Also at this time referred to Rehabilitation specialist for my increased back problems. Can’t get an appointment until Oct 6th.

Visit to Neuro on Sept 19th he checks my b12 level, etc. “normal neurological exam” sends me for MRI of head which is normal. I start to have increased tingling in my hand especially right hand and starts to feel weak. Start to feel a constant weakness in both hands and legs and feet. Tunnel vision really bothers me. Getting one bad headache a week feeling like my neck cannot support my head. Start to feel a tingle in my tounge, like an electric shock ,Bad leg cramps and pain wake me up all night. It hurts to have any pressure on my legs at all I am sleeping 3-4 hours a night max.

Go back for follow-up with Neuro this Monday and he insists I have no weakness and my exam is again normal. Says “you do not have a neuro-degenerative disorder” and you need to get past this and deal with your anxiety. Refuses to do EMG or nerve testing.

I don’t understand how anxiety can cause 24/7 muscle twitches all over, tingling and numbness and horrible back and leg pain. Some twitching in my arms too. Legs, arms feel weak. Hands are weak and it’s hard to grab papers. This just started Sept 19th. Right hand is cold all the time and gets a strange burning pain in the last two fingers. Hand tremors constantly. I have lost 15 lbs since Aug. I am trying to eat the best I can to keep my strength up. My jaw feels sore. I swallow a lot of air when I eat and burp a lot. I also have acid reflux. My voice is hoarse and I have started smoking again due to nerves. My legs are so stiff when I stand and I wake up 2 am every night and cannot go back to sleep. Hand weakness, 24/7. Eye floaters and tunnel vison. Definitely horrible anxiety and depression at this point, I don’t know what’s wrong with me, I am missing work and am exhausted and scared. Pain all over.

I feel like I am being brushed off by the Dr’s. I don’t know what to think. At first I thought it all stemmed from the steroid injection. But then looking back I wonder if my herniated disc was caused by muscles already being weakened by an underlying MND the whole time. I am only 28 and “young” to have back problems. I have two young children. I don’t even know what to do from here. I have my appointment on Monday with the back specialists and they do EMG testing there so I am hoping for more definitive answers. I am usually a logical person and I was studying to get into nursing school so I know something about how the human body works. I don’t understand how all these awful physical symptoms could be caused by anxiety. But, right now I am so overwhelmed and I am hoping someone can offer some guidance or ideas on what could be going on here or any similar experience. I appreciate any insight so much.

Oh dear Rubylea, you've certainly been through an awful lot lately. I'm so sorry to read about your pain, all your investigations and all the doctor's visits that you've had to go through. It doesn't seem fair that some-one has to go through so much! Here's a hug for you.....

I wish that I could offer you some constructive advice, but I'm afraid I can't. What I can do however is to welcome you to NeuroTalk, and say how pleased I am that you joined us.

I'm now hoping that some-one else will come along soon who has more experience with your condition and symptoms.

Hello and welcome to Neuro talk, sorry about how and why you found us, but am glad you did. you will find many helpful and kind people here, like Koloa said sorry you been through so much. Hopefully you can find some answers and support that will help you feel better, again welcome to NT

Hello and welcome to NeuroTalk. Great to see you have come to be with us. Just let us know if we can be of any help.

Again welcome, looking forward to seeing you around.

Darlene

I am so sorry to hear of your pain. I have been through some of the same things you have. I have had 7 back surgeries also. I can say my experience with neuro doc's isn't good. I like Osteo doctors much better. One neuro doc told me I had so much scar tissue, that he wouldn't touch my case with a ten foot pole. However, he did put a spinal stimulator inside me, that I had to have taken out the next year, for it did no good. I still had to have my last surgery.

I have had the jerks also, Mine are bad in bed. I take Cymbalta for them. Once you have problems with the back, it seems in time, it does get worse. Your doctor's have done some things right. They don't just jump in and do surgery. PT is one of the first things, along with pain medicines. A Discogram tells the story if they are thinking about doing surgery. It is painful also!

Numbness is also common with back problems. Maybe you should ask for another opinion. There are plenty of doctors out there and a good one will come alone. Let us know what happens and Good Luck!
Blessings,
Fancylady

....definately I have learned that surgery should be a last resort when there may be nerve damage if it is not done. You have been through a lot, to say the least. I had sciatica starting in my late 20's. But I had a spinal anamoly complicating things. I used a TENS unit to control it. And it did help. Some of the symptoms you describe, I have as well, but it is due to Fibromyalgia. You might want to check that out. You have to have a good doc. I hope you get your answers and some help. Take care...

So sorry to hear this awful list of problems. With my experiences after a bad fall (outlined under this same subject above) over a year ago, I've been reluctant to consult with any physician about my current problem.

What has been your experience or what have you heard from others about the success of working with chiropractic neurologists?

Please don't give up your plans to get into nursing school. You've learned so much about pain and how the human body reacts to it, wouldn't it be great if you could become that truly knowledgeable caring nurse who could help thousands of suffering patients over the course of your lifetime?

It is sad when far too many physical symptoms are being attributed to things like anxiety. Please don't let this overwhelmed and defeat you. I am hoping that a Chiropractic Neurologist can help both of us. Have you considered having a standing MRI done, having it evaluated by a good radiologist and a well-respected chiropractic neurologist? This might open a whole new avenue of examination as to what is going on with unexplained chronic pain.

I'm really sorry to read what you're going through and here's a hug too

I too am so frustrated with the Drs and medical side of things and it seems I'm going the same way as you. In brief:

Jun 08 - started getting 'clumsy'... falling over a lot, dropping things, walking into things, missing my mouth when eating/drinking and generally spilling things down myself. Took to wearing flat shoes as I thought maybe it was age catching up with me early (I am 41 years old, which is still young but I thought maybe it is catching up with me earlier than most).

Jul 08 - started getting leg cramps during the night... some lasted 20 minutes or more, sometimes got 2 or 3 per night and they were very intense. My Grandmother used to have leg cramps so I ignored this as well.

Aug 08 - went on holiday to a hot climate... ankles swelled up... feet became very, very painful... it got worse when I came back from the holiday... my feet swelled up so that I had to go up 3 sizes (from a UK 5 to a UK 8) and wear flat Ugg type boots. Got some numbness in my feet as well. Went to the Drs who sent me for a circulation test with a specialist.
Measures taken by myself that helped Bought a circulation booster (TENS machine) that took the edge off the pain.

Sep 08 - started getting pins & needles, shooting pains and a constant ice cold burning sensation in my calves (ranging in severity from a 2 to a 10). Became extremely sensitive to draughts, which made my legs feel like they are being stabbed and torn from the inside. Sensitivity to touch... constantly tender legs. Circulation test with specialist showed circulation was OK. Drs said there was nothing they could do.
Circulation Booster became too painful to use in early September.

Oct 08 - Tenderness spread from calves to thighs... weakness in right leg came on meaning I had to use a walking stick. Pains got more intense. Saw Drs 3/4 times... said I had to wait for an Endocrine appointment (I had a Thyroid Storm 3 years ago and they felt this could be related).
Problems at work as it was difficult to concentrate, especially when the acute attacks became so painful. Started making errors quite frequently.
Measures taken by myself that helped Used a blanket when sitting to keep out draughts. Started wearing 2 pairs of socks, thermal leggings, leg warmers, a pair of trousers and a thick skirt over the top.

Nov 08 - Saw Endocrine Specialist early Nov. Said he thought it could be related to the Thyroid as I was on a block and replace regime for 2 years, or there might even be a slipped disc involved . Action taken by specialist was to stop all thyroid meds (Carbimazole, Thyroxine and a beta-blocker) and then 'see what happens'.
Booked an appointment with my Osteopath (I have a mild curvature of the spine and like to see him regularly to ensure it is kept under control). After seeing the Osteopath it initially went into a kind of remission: the pain became less (although it didn't go completely) and I thought "maybe this is it... maybe the nightmare is over." Last Wednesday 26th it all came back with a vengance... in fact its got much worse.
I am now having to use 2 sticks at times to get around, have difficulty dressing and undressing myself, have difficulty getting in and out of chairs and bed, my voice has become hoarse, my throat swells up and my uvala swells up with no known trigger and randomly so that I find it difficult to breath unless I'm lying down or walk with my head held back. My eyes are constantly burning, sore and swollen and sometimes I have double vision and often I have what I call 'moving' vision... things appear to move even though I know they are not.

I had got to the point where I was basically dispairing: on the whole I feel that when I'm at the Drs/Specialists they feel I'm exaggerating or that I'm taking up their time.

Thanks to a kind person on this forum, I now feel validated enough that I have got my fight back. First thing tomorrow I'm going to insist on going to a Neurologist, something I have asked for 4 or 5 times before and been told "You have a Thyroid condition. It is probably related to the Thyroid. Wait and see and then we'll see if we send you to a Neurologist." I'm not going to take that anymore... what are they waiting for? For me to end up in a wheelchair? To have severe breathing difficulties? To loose my eyesight? I'm not going to take it and I don't think you should either.

Very, very best wishes to you and I do hope that everything resolved.

Also many thanks to those wonderful people who set-up and administer this forum... at the moment it is like a beacon of hope for me and I truly appreciate this fantastic resource and the support you get from it.

Sue

I have a similair experiance as you both do. Three years ago I fell off a ladder painting my cielings, mind you it was only from the second wrung. I have had back pain since then. I seen my ortho doc first, then a neurologist, then back to the neurologist when could not move my legs. Later got refered to the pain doctor, he does the most of all of them. Earlier this season I was refered to a physicist. The physicist diagnosed it all as a conversion disorder. I just think I am gonna give up on doctors, most of them casually blame the ptsd, or the depression for all my problems any way.

Hi Rubylea,

I wouldn't say that all those symptoms are caused by anxiety, but could they be? Out of curiosity, I just did a couple of quick google searches for "anxiety can cause" and "physical symptoms of anxiety" (both within quotes). The short answer is... pretty much.

I think most of us here understand the feelings of being overwhelmed when suddenly (or not so suddenly) confronted with a baffling medical puzzle that no-one seems to understand - especially one involving (chronic) pain. It's a wake-up call. Yet some of us can go for years without clear-cut or satisfactory answers.

While we all hope for a speedy resolution for you, there's a good probability that this will be a process. As a life-altering event, there's a lot in common with other kinds of life-altering events, so try another search for "stages of grief" (within quotes). You may not experience all of these stages, and you may experience them in a different order, but it's likely you will experience at least some of them.

How is your relationship (confidence, trust, communication) with your PCP? You are the captain of your Medical Team, but your PCP is your "quarterback" (If the analogy bothers you feel free to pick another); S/he will be the most important member/coordinator of your team, so a good relationship with him/her is paramount. Whether you stick with your current PCP or find another, develop a strategy with him/her for going at this thing logically & methodically.

I don't have experience with your specific issues, but I do have stenosis in the same location (L5/S1), and everyone here is on "the journey". One positive outcome could come of all this: If you stick with your nursing plans, this is going to make you one heck of a more effective professional because you will know what it's like from our (patient's) POV, and will know exactly what your patients will be feeling and going through because you're there now. If only all medical professionals could experience that for a time.

I'm going to stop here (for now); it's late, and I don't want to overwhelm you. Hang in there.

Doc