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foreversore posted:
Hi, every one. I am new to the pain mangement community but have been a member of the Fibromyalgia community for about a year. I am a 36 year old mother of 2 girls ages 18 and 10. I worked hard all of my life doing much physical labor up until about 3 years ago when I had to stop working due to chronic pain and fatigue. I have multiple medical issues and take a number of medications.

I take 50 mg of Savella twice a day for Fibromyalgia, 12.5 mg of HCTZ for edema of my calves, ankles and feet, bupropion twice a day for depression, Rx Vit D and OTC calcium+D for Vitamin D deficiency, flexeril at bedtime, klonopin at bedtime for restless leg syndrome and a Vit B12 supplement as well.

In addition to FM, RLS and chronic back/neck pain I have a multinodular goiter, cartilage deformity of the knees (knock kneed), flat feet, depression/anxiety, sleep apnea, mild scoliosis of the lumbar spine and chronic migraines.

I was recently referred to a pain management clinic for epidural injections. My lumbar injection was a massive failure. As he was injecting the medication I started have a burning, throbbing, salt in open wound feeling from the injection site all the way down thru my thighs. After a month I still have these new and infuriating symptoms. The doctor decided that he won't be doing any more lumbar epidurals for fear of making it even worse. Two weeks ago I had a cervical epidural and it did absolutely nothing at all.

A little more background...In the last 3 years I have seen 4 doctors, 2 nurse practitioners and 3 physical therapists for my back and neck. Failed medications include Norco, Tramadol, naprosyn, ibuprofen, cataflam and yes flexeril too. I did over 6 months of PT using different therapies and exercises all to no avail. I feel as tough I am being passed around like a hot potato that no one wants to touch. I have had 2 surgeons say that while I may need fusions they really don't want to do it as they feel it will increase my pain. Now that the epidurals are failing the pain management doc wants to send me back to the surgeons to see if they will reconsider. I am currently on no pain medication for my neck and back and I am losing a lot of sleep due to unbearable pain. I am supposed to hear from my pain management doctor tomorrow to see what the new plan is going to be. At this point I am willing to try ANYTHING at all if it means I can knock my pain level down to a consistent 4.

Ugh! Fibro fog moment...sorry this is so jumbled and out of order. I am to tired to go dig out my MRI results but I can tell you that the majority of my discs are herniated albeit most of them mildly. I have one cervical disc that impinges on my spinal cord, 2 thoracic discs that impinge on the thecal sac and 2 lumbar discs that press on the nerve roots to the nerves leading to my legs. I have daily spinal pain from top to bottom with 3 really tender spots and my trapezius muscles are constantly sore and tight. I also get spasms in back and legs off and on.

The only exercise my doctors allow is water aerobics in a warm water pool at my local YMCA. It doesn't really matter what I do. I am really restless and frequently change from sitting to standing to walking to laying down in bed all in attempts to ease the pain. Because of the FM I wake up very stiff in the mornings and it takes a few hours for that to wear off. I start my day with a pain level of at least 4 (sometimes higher) and it ALWAYS gets worse as the day goes on. I am often between 7-10 by bedtime which is why I have extreme difficulty sleeping.

I am here to learn all I can in hopes of finding a treatment that helps me get my pain to a manageable level. Any advice is much appreciated.
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foreversore responded:
I also forgot to mention that I have IBS and get Depo shots to stop my menses due to dysmenorrhea. I probably forgot a lot more stuff but I will remember it all later.
 
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davedsel57 responded:
Hello and welcome.

I am sorry to read of your struggles. I fully understand.

Looks to me like you are doing all you can to manage your pain. You are keeping track of everything which is a very good thing.

The only advice I would have is to make sure you have a good mattress to sleep on. Many people with chronic pain like memory foam mattresses. My wife and I invested in a Sleep Number bed 4 years ago and love it. If you need a new mattress, shop around and lay on the mattresses in the stores before making your purchase. Make sure what you are sleeping on supports you, give you relief and is right for you.

My motto is to always keep doing your research, keep as active as possible and keep a positive attitude.
Click on my user name or avatar picture to read my story.

Blessings,

Dave
 
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davedsel57 replied to davedsel57's response:
I forgot to mention (I have fibro too) that I love your avatar. Is that your dog? What breed is it? We have a pekingese/shih-tzu mix and a full shih-tzu and the dog in the picture looks similar to our Rosebud and Buster.
Click on my user name or avatar picture to read my story.

Blessings,

Dave
 
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foreversore replied to davedsel57's response:
Thank you Dave...just wish I could knock this back/neck pain down a few notches so I could sleep a little better. My avatar is currently my boy shih tzu Wicket. I have a female shih tzu as well named Willow. I love all animals but shih tzu is my absolute favorite dog breed!
 
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77grace responded:
Hi and Welcome!!
I need to keep this short because I'm having trouble with my Computor!!!
I just heard about a really great treatment that you can do at home and its painless!Its called OIL PULLING!
Please look it uip, a friend told me and she is doing it !We have heard that it helps Fibro!!!Please look it up,sounds Great!It is also Natural!
Let me know if you looked aat the site!
Blessings,77grace
 
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davedsel57 replied to 77grace's response:
77grace, I'm wondering if this is what you are referring to: http://www.oilpulling.com/oilpullingmethod.htm
Click on my user name or avatar picture to read my story.

Blessings,

Dave
 
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Caprice_WebMD_Staff replied to 77grace's response:
It's really great that you always want to help, Grace.

I'd like to see any studies that support the claim of this helping.
We must let go of the life we have planned, so as to accept the one that is waiting for us.
~Joseph Campbell
 
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foreversore replied to 77grace's response:
I'm not sure if I could manage this due to TMJ. But thank you for the suggestion
 
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foreversore replied to Caprice_WebMD_Staff's response:
Caprice! It's nice to see you over here too! Two groups same moderator, I like that
 
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foreversore replied to foreversore's response:
Here it is Wednesday (well, actually Thursday morning) and I have yet to hear back from the pain management clinic. And as you can see from the time of my post, I am still having sleeping issues due to pain. I guess I just need to go in there and park myself until I can talk to a nurse in order to get something done about this. IDK if the pain is being caused by my neck/back issues, fibro or the migraines causing tension but I need to get it and keep it at a more manageable level.

I found my MRI results so here goes:

CERVICAL SPINE imaging done 4/21/10: There is straightening of the cervical lordosis and upper thoracic curvature. Degenerative changes seen in the cervical spine with disc bulges, superimposed protrusions and uncovertebral osteophytes.
BREAKDOWN: C2-C3 no canal stenosis or foraminal narrowing.
C3-C4 disc osteophyte complex, predominantly left sided uncovertebral osteophytes and bilateral facet hypertrophy contribute to flattening of the ventral thecal sac and left lateral recess as well as mild left neural foraminal narrowing.
C4-C5 no canal stenosis or foraminal narrowing
C5-C6 Disc osteophyte complex and superimposed left paracentral protrusion flatten the left ventral cord contour and left lateral recess. Bilateral uncovertebral osteophytes and facet hypertrophy contribute to moderate left and mild right neural foraminal narrowing.
C6-C7 tiny midline protrusion indents the ventral thecal sac but without substantial canal or neural foraminal stenosis


THORACIC SPINE

T1-T2 no canal stenosis or foraminal narrowing
T2-T3 and T3-T4 tiny disc bulges without substantial canal or foraminal stenosis
T4-T5 and T5-T6 no canal or foraminal stenosis
T6-T7 Disc bulge and superimposed paracentral protrusion flatten the ventral cord contour. No foramina are present.

T7-T8 Diffuse disc bulge indents the ventral thecal sac but without canal or foraminal stenosis.
T8-T12 no canal or foraminal stenosis
there are a few small Schmorl's nodes seen along the endplates.



LUMBAR SPINE: x-ray showed mild scoliosis MRI results below.
T12-L3 no significant disc bulge, canal stenosis or foraminal stenosis.
L3-L4 broad based left foraminal to lateral protrusion. Mild facet hypertrophy. No circumferential canal stenosis. Mild left foraminal stenosis with direct abutment of the exiting nerve root.
L4-L5 Disc dessication. Mild diffuse disc bulge asymmetric to the left. Mild facet hypertrophy. Flattening of the ventral thecal sac without canal stenosis. Moderate left foraminal stenosis with exiting nerve root encroachment. No right foraminal stenosis.
L5-S1 Mild facet hypertrophy
And here are some Recent labs: ANA negative, Rheumatoid factor negative, SED rate 26 range is 0-20, uric acid 6.0 range 2.3-6.6, Epstein-Barr positive, Vitamin B12 262 range >200 ( I am on shots and oral supplements for this), Vitamin D 10.7 range30-100 ng/ml (I am on VERY heavy supplementation for this)


I only posted these reports to kind of give you an idea of what I am working with back/neck wise.
 
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davedsel57 replied to foreversore's response:
Hi again, foreversore.

I understand about the MRI. My reports look similar. Now it is up to two pages with the phrases "advanced" and "severe" appearing far more than I would like to see. Uggghhh.

I will be praying and hoping your pm doctor gets back to you soon, like now - today!

Have a blessed and thankful Thursday.
Click on my user name or avatar picture to read my story.

Blessings,

Dave
 
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Caprice_WebMD_Staff replied to foreversore's response:
It's always good to see you too, Foreversore. (I moderate many communities here at WebMD so I get around.)
We must let go of the life we have planned, so as to accept the one that is waiting for us.
~Joseph Campbell
 
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ctbeth replied to foreversore's response:
Wow, the oil pulling page to which you posted the link sounds pretty bizarre.

Is this recommended fro fibromyalgia?

I guess if it works- why not?
.
RE; TMJ- the article does say that you do not have to do this vigorously, just swish around.

Please let us know if you decide to try this.

I see that you "failed" taking "Norco, Tramadol, naprosyn, ibuprofen, cataflam and yes flexeril too."

Did the medicines not relieve your discomfort, or did you have more-than the usual and expected side effects, or allergies?

I am an RN and have read your MRI results. I do not think it's my place to make any comments about what you have posted.

I would hope that your MD has discussed the findings with you. May I ask which level the MD has discussed fusion?

The MRI is from April 2010, so there may be changes since then that are causing you difficulty.

Has your MD discussed up-dated studies?

There may be something else going on since then, especially if you're experiencing new symptoms.

Have you heard back from the MD yet?

If he/ she has not contacted you yet, I hope that you'll call the office. It's just not right when an MD says that he/ she'll call you and then does not do as he/ she said.

That is dishonest and unfair to you!

Keep in touch,

CTB
 
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foreversore replied to ctbeth's response:
Beth I would welcome your comments on my MRI. I know it is just your opinion but being a medical professional myself I know that nurses are a lot smarter than they are given credit for.

I also failed over 6 months of PT. PT made my pain worse (not just the exercises but some of the therapy modalities too). The medications just flat out haven't helped at all and no side effects to those meds. The meds I failed due to side effects were gabapentin and amitriptylene (which I forgot to mention in an earlier post). My Lumbar MRI is from earlier this year but the cervical and thoracic are a few years old. No, no one has suggested getting an updated MRI. I have seen 4 doctors, 2 nurse practitioners and 3 physical therapists in the last 3 1/2 years all for my neck and back issues. I keep getting passed around. Two surgeons already told me they didn't want to do surgery until it became "necessary". When the 2 surgeons (different offices I got a 2nd opinion) discussed my MRI results with me they said I had mild arthritis and there was no way I could be experiencing the level of pain I claimed (this was before my FM Dx). My rheumy who gave me the FM Dx looked at the MRI's and he sent me to pain management mostly due to the lumbar MRI. In addition to the pain my rt leg tends to give out on me with no notice and I fall at least once a week. I had a lumbar epidural a month ago that increased my pain twofold and a cervical epidural 2 weeks ago that did nothing at all. Since I seem to be failing the epidurals, the pain management doc wants to send me back to the surgeons for a cervical and lumbar fusion. I just think the buck needs to stop somewhere, anywhere and someone needs to treat my pain. The only "pain med" I take is Savella 50 mg BID for FM pain. I have so much pain in my neck, back and knees (arthritis there too) that I can't even tell if the Savella is helping. It's not hurting...I don't have any of the side effects some ppl complain about.

Anywho I am beyond frustrated. I'm tired of being passed around from doc to doc without any relief/results. I know I will never be pain free, I am realistic about it but I just want my pain at a more manageable level. I don't think that's too much to ask for. I don't care what they do to give me relief. At this point I will try just about anything to dull down the sharp stinging, burning, gnawing feelings in my lumbar/rear area, the constant throb and ache in the thoracic area (it would be nice to be able to wear a bra again) and the pinch in my neck and tightness and ache that radiates thru my rt shoulder and the constant achy stiff traps. After 3 1/2 years of this I have had it and I am getting to the point where I am bitter and angry. i want to be able to touch these doctors and give them my pain for just one hour...then maybe they will have more compassion to my plight. It is rainy and cold here and will rain for the next 4 days. I can't stand up straight and have to walk hunched over and I am limping on my rt leg due to my knee.

I went in to the PM clinic earlier and sat in the waiting room as long as I could but a nurse couldn't get freed up to talk to me. I will be calling first thing in the morning and every hour after that until I get a response. Well its 2 am. I am hurting really bad but I am going to go lie down and hope my heated mattress pad can ease some of the stiffness.


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