Trying to Get Answers for my Back Pain

For the last year I have had chronic back pain. Really for the last two years. For the last twenty years since getting Lyme, I have thrown out my back and neck about once a year. Something changed the last two years. It was always my lower back I threw out but this time, it was my upper back.

About two years ago, I bent down to pick up my dog Oliver. I felt a sharp tear like feeling in my upper right back. I stood up quickly and thought for a second it would fade. But as the minutes went on it grew worse and sharper. I had to lay down. I took ibuprofen right away and tried to just lay still.

I really hate pain meds and I knew going to the ER, would bring them giving me pain meds.  I don't like how they make me feel. I can't stand that feeling of being so out of it and not being in control of your own body. The more they give me the more anxiety I get.

After three days of laying in bed it got really bad. I mean I couldn't barely move. I was in my bedroom upstairs and tried to get up to go to the bathroom. It felt like someone stabbed me in the upper back with a knife, like right under my shoulder blade. I made it to the stairs and collapsed. My boyfriend, Paul had to call 911. I couldn't move without  horrible spasms.

As soon as I got there they gave me ativan and some other type of non narcotic pain med. Maybe Toridal, I dont remember. But it helped a lot. I was actually able to walk out of there on my own a couple hours later. No xrays or MRI was done.

I never could completely recover though. Each day as soon as I got up, to be able to function I'd have to take ibuprofen, every four hours on a the dot. I did this for several months.

Then in August we planned on taking our annual "out east" trip so Paul could visit his family and I could visit my Lyme friends. We divided the trip up into two days but that still meant being in the car for at least 8 or 9 hour each day. My sciatic was screaming but it seemed like my upper back was going to be ok.

On our trip we took several trips to the beaches and other site seeing and family meeting ventures, including meeting up with a bunch of Lyme friends for a picnic at a waterfall. I was in pain but as long as I took my ibuprofen I could fight through it.

Then while at my friends house, I fell down cement steps leading to a pool. Ouch I had bruises on my back, side of my leg and even on the bottom of both feet.Weird right? But it didn't seem like anything "new" happened. I still went on to have my normal daily pain that ibuprofen would take of.

But on the drive home... even though I was laying down in the back of the car the whole way trying to nurse my sciatic nerve something happened. I felt ok when we stopped at the hotel to rest for the night. But the next morning  I woke up and knew I was in trouble. I had this pinching sharp pain in the same spot as when I picked up my dog months earlier and something pulled in my back. It was the same pain in the same place, only nothing had happened. I didnt bend over or anything new. We packed up, got in the car and I made about three hours from home and we had to stop an ER in Chicago. It was spasming so badly. Right before we stopped at the ER I had taken a Flexorol that the ER had prescribed me the last time I had thrown out my back but it made me have a bad reaction. My face started getting a weird hot flushing feeling like all the blood was running to my head. I couldn't stop shaking, it was so scary. I hate pain meds, they never make me feel right.

So at the ER the dr prescribed me valium but I didnt take any. I just sucked it up, and finally made it home. I thought maybe a couple days of rest would help. It just kept getting worse. At the time I was babysitting daily for my granddaughter, a couple hours a day and my boyfriend had to do all the lifting. If I tried to hold my granddaughter, who is my life by the way.. I would get instant spasms. Id don't know if my back pain is caused by Lyme or not, but man, everything just gets taken away that you love. It's like you are alive but you can't live. You can be a grandma but you can't be a grandma.

I started calling the dr and making appointments. But each time the suggestions are either steroid shots. which I have learned are unsafe with Lyme disease. So she requested I go to massage and chiropractor.

Massage did nothing for me, but it hurt. The chiropractor was so nice and sure that using a Sigma instrument would help. It's supposed to be the gentlest way to adjust your back. But man, the first time I went, I had severe nerve pain shoot down my leg into  my foot. Each time I stood on up the pain would shoot down. He wanted me to go back the next day too for three days in a row. It was all too much. I ended up doing the Sigma for three months, I think but I always just would end up in more pain then when I went in,. It would feel ok for about an hour but then inflammation or something sets in and I would have horrible pain up and down my spine, from top to bottom. Nerve pain going down my spine and branching out to my shoulders, back, down my butt, down my legs, it was terrible. 

Two news problems developed. Chronic lower back pain and this electrical shooting sensation that goes from my neck through my chest. Now everyday was my upper back still hurting but now my lower back and leg pain started. And I would get this random feeling like someone took hot oil and splattered it on me. It's like pins and needles.. with a hot or cold sensation that goes through out my neck, top of my back and through to my chest. Six months later I still get it a couple times a week. So I stopped going to the Chiropractor.

I had heard about a gene mutation that leads to a condition called, EDS or Ehlers Danlos Syndrome. Part of the symptoms were inability to heal from injuries, not being able to get numb from novacaine, chronic pain and dislocations. I asked my dr to refer  me to a specialist and she did. But he wasn't so sure... what I had. He wrote a letter to my doctor asking her to treat me as if I have EDS Type 2, but he did not firmly diagnose me with it. He said I had some signs of it but not all. He said I was not hyper mobile enough. And of course there are not blood tests to confirm either way.Another unanswered question. Do I have EDS too?

Shortly after the EDS dr visit, I was sitting at home playing with my granddaughter. I already was very careful of how I lifted her if at all. I found if I could slide her up onto my lap when I'm sitting in a chair it is usually ok. I was outside and did this and felt a pop in my shoulder. I had sublexed my shoulder.  I went to the ER and that dr told me I was just having muscle spasms.. no xrays, no catscan, no MRIs. Just told me Im having muscle spasms and gave me steroids.. yelled at me for moaning when my shoulder "spasmed" and was confused to why I would think I still have Lyme disease when  have already treated for it.

After my shoulder didn't get better I was sent by my regular dr to physical therapy where I went for a couple months working on my shoulder. The PT was very nice and said she had other EDS patients and knew that Lyme was not easy to treat and caused lingering problems. She said EDS and Lyme actually cause the same kind of damage to joints and ligaments. What I gathered from her as we talked is that the reason the chiro adjustments won't hold is because my ligaments are messed up. The chiro can put my joints back in place but without strong  ligaments to hold them they will keep sublexing or coming out of socket or place. It's been months now and my shoulder is still not back in the right place.

Sleeping is a nightmare. My back, neck, legs, shoulder all hurt. It's impossible to get comfortable. So the EDS Dr had referred me to a Rheumatologist. He told me to "Look at him, I don't have Lyme disease, so get it out of  my mind." He said even people who have Post Lyme Syndrome don't have symptoms after a year. He diagnosed me with fibromyalgia, hypermobility and spinal degeneration. So he DID think I was hyper mobile. How can every doctor have a different opinion and diagnosis? Either way he said he would call me in a week and we would come up with a plan to deal with my "Fibromyalgia." He never called. He just sent me a letter saying all xrays he ordered and all blood tests were normal. That was the last I heard from him.

A couple months ago I got up early in the morning.. and sneezed. I couldn't move. I was frozen in pain. I finally made it to my bed and took a valium, as much as I hate pain pills. I laid in bed for three days taking valium to deal with the pain. Just as I was getting able to start to walk again, something popped in my back as I lay there. Like this horrible spasming sharp pain. Again I could not move and Paul had to call 911 to come get me.

After a year of me asking my dr to order and MRI.. the ER doctor finally did. He told me he was probably going to send me to Madison to a back specialist but we'd wait on the results of my MRI. But after the MRI came back he came in and told me everything was normal, it was just back spasms and he gave me some ativan and sent me home.

Later when I got online this was my report. Is this normal?

Lower Back MRI

Comments from the Doctor's Office Mild multilevel spondylosis mild sliding forward of vertabra . Scattered regions of small disc herniation. Lots of arthritis. No significant central canal (spinal stenosis) or neural foraminal narrowing (pinched nerves).

Narrative MRI LUMBAR WO CONTRAST, 8/31/2015 12:11 PM, Southwest Health Center

INDICATION: 724.2: Lumbago

ADDITIONAL CLINICAL INFORMATION: Ordering Provider Reason for Exam: Technologist Note: concern for acute herniated disc vs epidural hematoma (history of Ehlers Danlos syndrome). Mid to low back pain. Bilateral leg numbness and weakness. Difficulty ambulating. No prev back surgery Additional: None

COMPARISON: None available at the time of dictation.

TECHNIQUE: MRI of the lumbar spine was performed utilizing multiple pulse sequences in multiple planes without contrast.

FINDINGS: There is normal lumbar lordosis. There is trace retrolisthesis of L4 on L5. Vertebral bodies are normal in height and morphology. No suspicious marrow signal changes are seen.

There is disc desiccation throughout the lumbar spine.

The conus medullaris is at the T12-L1 level and is normal in signal and morphology. There is no evidence for epidural hematoma or fluid collection.

Level by level assessment: At L1-2 there is mild disc bulge and facet hypertrophy. There is no central canal or neural foraminal narrowing.

At L2-3 there is no significant disc bulge. There is mild facet hypertrophy. There is no central canal or neural foraminal narrowing.

At L3-4 there is disc bulge and small central disc herniation protrusion type. There is small annular tear. There is mild facet hypertrophy. There is no central canal or neural foraminal narrowing.

L4-5 there is disc bulge with superimposed central disc herniation with small extrusion component. There is bilateral facet hypertrophy and infolding of ligamentum flavum. There is mild lateral recess narrowing. There is no central canal or neural foraminal narrowing.

At L5-S1 there is disc bulge with superimposed small central disc herniation with small extrusion component. Disc minimally impinges on traversing S1 nerves bilaterally right side greater than left. There is no central canal or neural foraminal narrowing.

Impression IMPRESSION: No evidence for epidural hemorrhage or fluid collection.

Mild multilevel spondylosis. Scattered regions of disc herniation. No significant central canal or neural foraminal narrowing.

Mild lateral recess narrowing at L4-5 at L5-S1.

Reading Radiologist - Dolin, Ronald Releasing Radiologist - Dolin, Ronald Dictation Date Time - 08/31/2015 13:09 Transcriptionist - NA

Component Results

Later my doctor ordered an upper back MRI which was pretty normal which shocked me as this is where most of my pain had been over the last year.

Upper Back MRI

Narrative

MRI THORACIC SPINE WO CONTRAST, 9/9/2015 12:29 PM, Southwest Health Center

INDICATION:
724.1: Pain in thoracic spine
729.89: Other musculoskeletal symptoms referable to limbs(729.89)

ADDITIONAL CLINICAL INFORMATION:
Ordering Provider Reason for Exam:
Technologist Note: Chronic mid back pain
Additional: None

COMPARISON:
None available at the time of dictation.

TECHNIQUE:
MRI of the thoracic spine was performed utilizing multiple pulse sequences in
multiple planes without gadolinium.

IV CONTRAST:
None

FINDINGS:
The spine is normal in alignment without antero or retrolisthesis. No loss of
vertebral body height. Multilevel disc desiccation with minor disc space
narrowing is seen especially through the midthoracic spine.

Segmental analysis shows no evidence of disc bulge, protrusion, spinal canal
or neural foramen stenosis with the exception of T7-8 where there is minimal
osteophyte ridge seen. Still no spinal canal or neural foramen stenosis.
Thoracic cord signal is normal. The marrow signal is normal on STIR images
showing no evidence of marrow edema. No fluid signal within the disc spaces.
Pre and paravertebral soft tissues appear unremarkable.

Impression

IMPRESSION:
Minor multilevel degenerative disc changes of the thoracic spine, otherwise
normal exam.

She referred me to a neurologist now. I can't believe in over a year in back pain noone has referred me to a back specialist but what can I do? So I am going to try Bee Venom Therapy.

Treatments I am Trying

Biomat

Bee Venom Therapy