sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I've been having excruciating back pain for over a month now. It's felt like my back has been breaking. Apparently, I was right.
I've been to the PCP, rheumatologist, and urgent care clinic because the pain was so severe that I couldn't walk upright. They didn't seem to think that my pain was important so all they did was give me a shot of toradol (which helped immensely but wore off after 6hrs).
Usually my chiropractor is able to fix my back pain immediately but after several adjustments I wasn't feeling better at all. He actually made me cry during one of the appts (which made him feel bad because he's one of my best friends...).
So he ordered x-rays. We finally got the results and saw the films today. I knew when I saw his face that it was not good news.
I have T6-T12 thoracic vertebral body compression fractures.
He said he's never seen this in anyone my age. This is usually something that people twice my age get and even then they typically have one or two compression fractures.
So here I am in unbearable pain. I tried to make an appt with my PCP and he is booked out for 10days! I also see his wife sometimes, she is booked out even farther!!! I love them personally but they are impossible to get in to see and to get help when I need it most.
I just feel like crying right now.
[ 06-08-2012, 10:15 PM: Message edited by: sammy ]
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Sammy:
You poor thing! As if Lyme wasn't enough to deal with. I'm sorry to hear you are in agony and having a hard time getting help.
Hang in there!!
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
| IP: Logged |
posted
I had the same thought. You need pain relief ASAP.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You TOLD your PCP of this and they are still making you wait 10 days? Most have some emergency time carved out. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
after my head/neck injury that made me disabled i couldnt get in to specialist for awhile and my friend a chiropractor gave me instructions on how to sit/stand/lie etc and uses of heat and cold etc...so i would not do more damage. maybe your chiro can do that.(i neede to lie down a special way)
i didnt look it up but i think torodol is an antiflam atory i got once after surgery...and i loved it too.
i know that ibuprofen is prescribed 800mg every 6 hrs...but of course you really need to be careful-take it with food etc...but that might take the edge off if you are not allergic to it.
can u tell us how old you r? does this mean you are dealing with osteoporosis?
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
If your insurance requires referrals your PCP via phone should refer you ASAP to ortho or neuro-surgeon. You shouldn't have to wait.
I'd just call one on my own or go to emergency room. It is nuts to wait.
Posts: 2675 | From ct, usa | Registered: Jan 2004
| IP: Logged |
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
Something you could try for the pain is LED light therapy. You could buy a SOTA LightWorks and have it in a couple days.
If you buy from their site, they have a 30 day guarantee.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
No, I don't have any pain relievers or anti-inflammatories, that's a huge problem. I've been telling all of my doctors that even 800mg of Ibuprofen every 4 hrs isn't helping at all.
I take curcumin (1,600mg), Xymogen's Nrf2, and krill oil which are supposed to be anti-inflammatory supplements but they are for general health. They don't help for immediate pain.
I understand why doctor's are hesitant to prescribe for pain because there are sadly lots of people that abuse medicines.
But my PCP knows me personally. I have NEVER EVER asked them for anything for pain. You would think that they would want to help me when I was sobbing and could hardly hobble into their office. Not so, it seems I have a "do not help" sign tattooed on my forehead, visible of course only by doctors.
Everyone acts afraid to prescribe anything because I am taking antibiotics prescribed by my LLMD. And I really wish my LLMD lived within driving distance right now. I would so rather see him than any other doctor around.
I can't go to the ER because my back pain problem has already been diagnosed. It is not immediately life threatening. My insurance will not pay for the visit. Also, my local ER's have not been too friendly or helpful in the past. I try to avoid them like the plague and only go when my LLMD forces me to go and calls them directly with orders.
I'm only 29, I shouldn't be having these kinds of bone problems.
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
posted
I know someone else with Lyme and the same problem. Seems that it would have to be Lyme-related. Can you have copies of the x-rays sent to your LLMD so he can prescribe pain meds? If not, I'd go to the ER.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
Maya12
Frequent Contributor (1K+ posts)
Member # 36392
posted
I aggree with 6 goofy kids I am a health care professional and this is definatly not something to play around with. With that many fractures you are at risk of causing spinal cord injury with any bending , twisting or sidebending movements basically you shouldn't move and someone needs to be taking care of you. Who cares about the price you don't want to mess around with this . Sorry to be so blunt but if you move the wrong way and one of the fractures moves you could blow a disk or compress the spinal cord. So sorry to be so blunt but this really concerns me. If someone came to me with 6 compression fractures I would immediatly send them to er no question
Posts: 1632 | From Canada | Registered: Feb 2012
| IP: Logged |
Maya12
Frequent Contributor (1K+ posts)
Member # 36392
posted
And its not just about the pain meds they will definatly help but that may give you a false sence of movement which could make things worse. Also the lower thoracic vertabrae house the nerve roots for many areas of the body such a vital organs etc. Also they may not want you to have too many pain meds as without them you will be more immobiale. Please again I really don't want to scare you. Just very concerned please reconsider going back to the er
Posts: 1632 | From Canada | Registered: Feb 2012
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
oh just remember, my friend fell and blew three vertebrae in her lower back. she went to the er and they put her in traction in the hospital. she was in severe pain. she was off work for 7 weeks healing. she stepped off a curb and fell.
please go to the er. hey, what can they do, deny you treatment? don't think so.
after all, lots of people go there and get plenty of treatment and they don't have insurance and don't even pay. (i know cause my sister, aunt, and family are in the medical field.)
also you are risking paralysis from the waist down if it's in the thoraic area. please don't delay.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
sammy, this is terrible.
Your doctor cannot fit you in for an emergency? If not, I agree with the others to either go to the ER or call your Lyme doctor.
I hope you can get relief soon. Please keep us posted.
Posts: 4681 | Registered: Oct 2000
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I called my PCP's office before noon and they could not fit me in until friday 3/23. The secretary said that I could keep calling to see if there were any cancelations for an earlier appt. She said that if I needed be seen sooner I'd have to go to urgent care or the ER. I was so upset, I didn't even make the appt with it being so far out.
My chiropractor did not recommend being cautious with my movements. I think that he was probably as upset and in shock about this diagnosis as I was.
His only recommendation was to get a dexa scan, work with my PCP to find out why my bones suddenly became so weak, and start bone building treatment. I'm already taking supplements.
Obviously he won't be able to do any more chiropractic adjustments for at least a couple months. Until I am more healed.
I will call my PCP's office again tomorrow to see if I can actually talk with an MA. Usually I end up leaving a message on a voicemail that never gets answered. In this case, it is worth a try to call again.
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
So sorry to hear this. Hubby had a rib fracture during a chiropractic adjustment about 3 years ago. He thought it was a strained muscle and went back for 2 or 3 more adjustments. Then one morning he could not raise his arm it hurt so bad -- so we went to the ER and they did an x-ray.
After that we found out that he has severe osteoporosis. He has had 3 annual Reclast injections and has had some minor improvement in bone density.
Can't remember which pain killer the ER gave him because he does not do well on pain meds -- used to aggravate his neuro symptoms.
Anyway -- there are 2 things that were somewhat helpful with the pain that you could try. Tiger Balm is available at most drug stores and some health food stores. You would need someone to rub that on the painful area. Or you could try Saint John's Wort oil applied topically as well or take St John's Wort tincture.
Hubby is 56 so he is quite a bit older than you. But we definitely feel that his tickborne illnesses have contributed to his osteoporosis.
SInce doing the Reclast injections hubby has a hard time keeping his blood calcium in the normal range -- even though he takes 3 different kinds of supplements.
He had 2 bulging discs which were very painful a couple of years before the rib fracture. Of course the neuros said that they should not be causing pain. But once he did lumbrosacral decompression treatments the pain went away and he has had no further problems.
Are you taking silica? Pretty sure that is one of the supplements Buhner recommends for building bone and cartilage. And it is really not that expensive.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Lymetoo, I also have a genetic disorder Ehler's Danlos Syndrome that causes hypermobile joints.
I get frequent joint dislocations and subluxations. My chiropractor literally cares for me head to toe. He puts me back together.
Even if I can't get back adjustments for several months I will probably need other chiropractic care for my hips or knees...something!
I have an immunologist appt tomorrow at a large university that will take several hours. When I am home I will use every minute of my spare time to try to get some help for my back.
At least I have a follow-up appt with my rheumatologist next week for back pain that I made last month. Hoping that I can move that up and get him to order the dexa scan and start treatment.
I need to get a referral to an orthopedic spine surgeon for a consult. I would also like to see an interventional radiologist because I know that they can do some minimally invasive procedures that provide immediate pain relief and structural stability (Vertebroplasty and Khyphoplasty). I want to know what ALL my options are.
I know that I need to act fast. I don't want any more damage.
Lesson learned. New severe pain is a sign that something is not good. Something needs to be addressed and should not be ignored, no matter what the doctors say. Because they treated me as insignificant, I began doubting my own strength and my own body. I thought that my having pain was my own weakness or poor coping abilities.
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Sammy - sorry to hear this. And didn't you have an infusion scheduled for this week?
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
| IP: Logged |
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Some years ago, I had major lower back pain to the point that I could not sit down for any length of time. Scans (don't remember what kind) showed some abnormalities. This was after I had started treatment for lyme and babesia. Eventually this treatment took the back pain away.
So, this can be one of the consequences of infection.
posted
In addition to everything mentioned, I would call around local and see if anyone has a good PEMF machine.
Posts: 52 | From USA | Registered: Sep 2011
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
OMG, sammy, I am just seeing this!! This is beyond the beyond. No wonder you have been in so much pain. I am so sorry to hear this.
I agree with what lots of people have said, you need to go to the ER, horrible as they may be, and get further evaluated, because as man have said, you may need to be immobilized for a while. You can't risk a spinal chord injury, which is all too possible. I know, because I have a friend who has had that, and I am close to it myself with bad stenosis.
Please, please to go the ER. Unless you can see a top notch ortho/neurosurgeon IMMEDIATELY, which is doubtful, you need to go to the ER. This is serious.
Please don't think you can muddle through until you get more help. You've had to do enough of that already.
Keep us updated. I'll call you soon. And I'll get on your case to go to the ER! Love and prayers to you.
Oh, and when you go, unless they say it's contraindicated for the reasons above, for Pete's sake, get some pain meds from them!! Even if it's true, they have to give you something. This is unreal. How heartless can they be??!!
You definitely will need scans of some sort to see more detail of what's going on; the ER could do that.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
posted
Sammy, I will be praying for you. You have been through too much. I know people who have had Vertebro and khyphoplasty and felt great after it was done. Hope they get on it quick.
Posts: 211 | From In my house | Registered: May 2007
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Also, you MUST get your PCP to give you a referral ASAP to a good Osteo/Neurosurgeon; you should NOT have to wait for a visit for this!! Maybe you should do the research about who you should see first (although it's possible the PCP would know who to go to). You have to demand this NOW. Or get a referral from the ER and get some kind of exception from your insurance co, due to the emergency and no response from your PCP.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i really wish you would go to the er hon.
i went one time and i was the only one there that had insurance. most were unemployed or whatever adn they were seen.
don't let money be an issue please. think about being in a wheelchair...
GO!!!!!
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
"Lesson learned. New severe pain is a sign that something is not good. Something needs to be addressed and should not be ignored, no matter what the doctors say. Because they treated me as insignificant, I began doubting my own strength and my own body. I thought that my having pain was my own weakness or poor coping abilities."
A lesson for all of us!
Hugs to you!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Sammy - I did not get to finish my previous post. I have been thinking about you. Hope you get some answers and some help soon. Be careful and take care of yourself.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
This is really horrible. I feel terrible for you. I cracked my spine once so I know how much it hurts. Maybe you could have a friend drive you pretty far away and take you to an ER there saying you need help immediately and can't get home. That is the only thing I can think of. Hang in there.
I wouldn't even mention the lyme. I know how they push us out the door when we say the L word. Say you have babesiosis.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Up for response from sammy. I know that you had the immunologist today. But this can't wait.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Thank you all for your advice and concern.
I basically spent all day yesterday in 2 hospitals.
First hospital was for my immunologist appt, I spent 5hrs there. Needless to say, I was a miserable mess by the end of that appt. I hurt so bad I really wasn't able to eat or drink anything all day. Even they insisted that I had to go to the ER.
So after I left their office, I tried to choke down a few bites of food, and since the pain was unbearable I finally broke down and went to the ER.
Spent another 5 or so hours in the ER. They at least were very nice. I didn't have to wait long at all to be seen. Maybe because I was in so much pain that I was holding my breath and tears were streaming down my face and I couldn't hardly walk by the time that I made it up to the registration window.
They did give me pain medicine, thank God. Also took chest x-rays because I have had severe rib pain and difficulty breathing from the pain. I had a copy of the back x-ray report so they did not want or need to repeat those.
The oral pain medicine didn't help hardly at all so they ended up giving me a shot that worked great. Too bad I can't have that in oral form.
I had to lay down and cover my eyes for the whole car ride home (~30min) because the bright lights and movements were making me feel sick to my stomach. Unfortunately when I got home I ended up throwing up on myself as I tried to get out of the car. Instinctively my body kind of curled up.
Oh, that was not a good thing because just as I was getting sick I felt this new horrible pain and a loud pop/break/cracking sound in my lower back. I just laid on the ground and cried for awhile because I hurt too bad to stand back up. I was so mad at myself. Why do these injuries keep occurring over nothing?
So, the ER also recommended that I see a neurosurgeon but did not give me a direct referral. I had to call the group today to try to get an appt. My poor mom, she's been so helpful, she had to take my x-ray films and report to the neurosurgeon's office for them to review it today. Hopefully they will call and give me an appt soon now.
Anyways, I'm still in significant pain but I'm alive Have 3days worth of Vicodin to help me through. Trying my best to get a good neurosurgeon. Was told that may have to wait another week or 2...
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
posted
OH man... I am in pain just reading this. Keep us posted and we will pray for you!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
OMG, sammy, this is making me cry. Given the horrific and dangerous situation, can't the neurosurgeon's office fit in you in ASAP on an emergency basis??!! Ask your mom to please nicely and persistently demand this!! This situation is utterly dangerous, not to mention so horribly painful beyond belief.
You should be in the hospital for Pete's sake! To protect your body from any more breaks, and from harming your spinal chord. (These are two different issues---the neurosurgeon and the hospital).
Lord have mercy! Love and prayers going out to you and your family. I pray for your mom to have the strength to demand what you need, too! You are in no shape to be having to do the calling/demanding, etc.
Have you called JF and Dr. H to let them know the situation? I know that there is not much they can do, but they should know. If they have any input at all . . .
You need a guardian angel badly! Lots of prayers and love need to go out for sammy.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
sammy, I am very sorry you are going through so much and having such horrific pain. I am glad you went to the ER and at least got some pain meds.
I hope the neurosurgeon's office will fit you in ASAP. Sometimes people need to be seen right away, and right now you do.
Keep us posted. Prayers continue for you.
Posts: 4681 | Registered: Oct 2000
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
call them and tell them you have vertabrae pressing on the spinal column with loss of sensation in legs and loss of bowel, numbness in buttocks.
you'll get in.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
gees. well as bad as the the pain is i am glad you got some relief and it seems you have moved a few steps forward without the pcp
good luck. i keep thinking of what maya said about hurting your spinal cord. seems like you really shouldnt move much until a good doc figures it out
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Holy buckets!
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
| IP: Logged |
posted
Dear Sammy,so sorry you are having to go through all this.
Blessings to you getting all the help you need and comfort. I feel so bad for you. Healing Hugs Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
| IP: Logged |
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
<<<<< sammy >>>>>,
Dear Lord,
Sammy is in so much pain, and needs your protecting Angels until she can be properly treated.
Please blanket her with love light and restful peace. Let her stomach be soothed,so there is no more nausea, and keep the bones in place while she waits!
Please let them work her in for the needed appointments very very quickly!!! And please let the pain stop.
Give the doctors and surgeons willing hands and caring hearts to help Sammy. Please do not let any further damage occur!
In the name of the Lord Jesus Amen!
Sammy you have our prayers hon!
Jus' Silverwolfi and TxCoord too
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
When I gave the neurosurgeon's office my medical history over the phone I told them that I have had new numbness and tingling in my arms.
I also broke down and cried when she told me that I may have to wait a week or 2 to see the doctor. She tried to keep asking me questions but I couldn't talk anymore. I just kept crying because I was so upset and so overwhelmed by this whole awful situation. I think she finally got the point that I really was in excruciating pain and really did need seen ASAP. At least she seemed more compassionate after that.
I felt dumb for crying again but I couldn't help it. I just couldn't imagine waiting 2 more weeks before I could see a neurosurgeon for this horrible pain. Plus, after last night, I don't want to cause more damage!
Hopefully they will call me tomorrow with an appt date or MRI scheduled.
I am usually very stoic when it comes to pain and sickness but this has pushed me over the edge. I've never cried so much in my whole life. It's really embarrassing.
I don't even know how to tell my LLMD about all this. He knows that I've been having back pain and seeing my chiropractor for it. At first he thought it might be a herx but then he said that a herx shouldn't last this long and it should have let up by now.
I feel so dumb, I don't know how to tell my LLMD that I fractured all these vertebrae. I don't want him to get nervous and change my treatment protocol because then I might feel even worse.
Thank you all, I really would appreciate your prayers.
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
I would cry buckets! NO SHAME there at all, honey!!
PS.. YOU did not break them.. they just BROKE!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
This is the most horrific thing I have ever heard. I wish there was some way to help you. If it were me I would have someone drive me to a far away hospital and tell them I had an accident.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
posted
sammy, Praying for you. I'm so sorry you're going through this pain ... it's okay to cry (just reading this, I cry with you)!
May God bless and heal you as you sleep and bring the right doctor into this case.
Psalm 126:5 (NIV) Those who sow with tears will reap with songs of joy.
-------------------- Ecclesiastes 4:9-10 Two people are better off than one, for they can help each other succeed. If one person falls, the other can reach out and help. Posts: 338 | From NEPA | Registered: Mar 2011
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Wow, Sammy, this is horrible. Can you open the phone book and just start dialing more neurosurgeons? Or your lyme doc might tell you who to call (definitely worth calling).
I think Maya is right, this is nothing to mess with. It is more important that you see someone pronto, than wait for a specific doc.
Tell them that the pain has gotten much worse (even if it hasn't), and that it is absolutely unbearable.
You really shouldn't have to wait. Any compassionate doc should get you in there quickly.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
from experience with llmds-good ones-when it gets acute like this with clear dx(xray) and regular docs involved the llmds want to back off. it happened to me a few times...when gi or general surgeon handled a crisis and then i went back to llmd
you might have to stop lyme tx for awhile-sometimes you cant get the emergency care while on the lyme meds...but thats ok. it was for me.
i just really think you need to limit movement. can you get someone to talk for you on the phone?
maybe they think you are more well than you are cuz you are alone. maybe you could have someone stay with you til the pain is under control.
good luck
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Embarrassed by crying??!! Are you kidding me? They're lucky that you aren't screaming! And if you weren't crying, no one would get it. People can be unbelievably dense. It's your PCP who should be embarrassed, and much more than that!
It's still clear that you should be in the hospital now. You must go to the hospital and insist that you be admitted---unless you can see the neurosurgeon IMMEDIATELY. Let them know that you can't move, eat, etc., and that you are at immediate risk of paralysis. This is so far beyond belief.
Do NOT try to hold in your tears, especially for any doctors or doctor's sec'y's! They won't begin to get it otherwise.
On the issue of telling your LLMD, on second thought, I think you and Ipakayak (sp?) are right. Probably wait until the "dust has settled" more and you know what is going on and what will be done about it--or until you have to let them know. If they get upset that you haven't let them know, you are too busy coping with the situation and the pain.
Lastly, I wonder if any of the meds you've been on have been a factor in this or not. I would ask your various pharmacists to look into whether any of the meds that you are on that they are filling, or the combo, could cause this---at least in part.
The infections, the Ehlers-Danlos may be the main part, but it's worth checking on--rather let the pharmacists do the work! If fact if anyone of them could check ALL the meds you're on in combo, that would be great.
Lord, Lord, Lord have mercy on sammy, please!
[ 03-16-2012, 02:08 AM: Message edited by: Rumigirl ]
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Sammy - I have not had a chance to read all of this. Just a thought for pain: can your chiro do any kind of "safe" pain therapy for you like cold laser? Ultrasound?
I know that Iontopheresis (sp?)works very well. But I think the drug is a steroid. Albeit very low dose. I wonder if another drug could be used the same way?
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
| IP: Logged |
linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
This sounds like an emergency to me.
Have you tried to get in to see an orthopedist? They are used to emergencies and might have openings set aside for situations like yours.
I would call around and see if I could get in to see one. They specialize in your kind of injury.
They usually have CT scanners, xray machines, etc. in their offices. Also, he/she might be able to admit you to the hospital without going to the ER.
Sorry if I have repeated advice from above posts, was unable to read it all.
Hope you get some relief.
Take care and God bless.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
Sammy do you live in a large city? Should have more than one hospital.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Thank you for your prayers, encouragement, and advice friends
I do live near a larger city so yes there are many good hospitals nearby if I were to need another one.
I chose to go to that specific hospital ER because they are affiliated with an excellent neuro group called the Mayfield Clinic. I was hoping that one of their docs would be on call... maybe by chance I would get seen or get a direct referral or appt.
So even though I didn't get seen that night by a Mayfield doc, one has now accepted my case. I am scheduled for an MRI and better quality x-rays tomorrow. Once the reports are in on monday, he will decide what else needs to be done and will schedule the appt from there.
I know fractures sound like ortho problems and that's what I thought at first too. I've learned that orthopedic spine surgeons do not handle cases like mine. You must see a neurosurgeon for repair (for vertebroplasty or kyphoplasty and whatever else they might need to do...).
I've been very conscious of how much pain medication I am taking. Trying to take as little as possible. Then I get upset with myself because I still need the full dose that they prescribed... just to be able to move and breathe.
So I called my PCP's office again today and asked if they had any cancellations for monday. They had one appt slot open up, thank God! So I will be able to see my PCP on monday and hopefully he will agree to refill my pain meds to help me last until I can get in with the neurosurgeon. Of course, we also need to discuss why I'm suddenly having these fractures in the first place and possibly start a treatment for that too.
Monday feels so far away! I'm trying to be more careful with my movements so that I don't get further injured.
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
thank goodness...but please be careful with movement...and get help if you can
just to clarify-above i did not say "dont talk to your llmd" i said in my experience when i did talk to my llmd when in crisis he (they) always told me to deal with crisis-let attending doc tell me what meds to take or stop...and then go back to llmd when stable
good luck. be careful
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
sammy, I am so glad you are having testing done tomorrow and that a good doctor has accepted your case. What a relief!
Please take whatever pain medication you need. You will not be on it forever. Intense, constant pain can be so draining.
I hope the tests go well tomorrow. I also hope your appointment with the PCP goes well on Monday.
Do be careful with your movements and get plenty of rest in the meantime.
Posts: 4681 | Registered: Oct 2000
| IP: Logged |
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
<<<<< sammy >>>>>,
Prayers continue for your healing and protection, I am so sorry you are in such pain.
More gentle hugs and prayers continue!
Dear Lord,
Thank You that Sammy can be seen soon, keep her safe, and swaddled in Your love and comfort as she waits and while she goes thru the tests.
Please keep the Angels surrounding her,with gentle hugs, and freedom from pain.Let her have peaceful, restful, healing sleep.
In Jesus Name Amen!!!
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
| IP: Logged |
posted
First and foremost: Pain relief. A medication that is, in essence, natural and has been shown to relieve the pain of compression fractures, is the hormone calcitonin, and it comes as a nasal spray. Next is diagnostics, but don't waste time; a dexa scan will tell you what you already know, that you have osteoporosis, but it won't do much more than establish a baseline. You may need to see an endocrinologist to understand why you have soft bones at a young age. You should have serum calcitonin measured, as well as the 25 hydroxy and the 1,25 dihydroxy vitamin D levels. Don't let them put you on the 50,000 IU vitamin D protocol if your vitamin D level is found to be low, you will need D3, the 50k is D2. Start D3 low and go up slowly.
Posts: 60 | From Maine | Registered: Jan 2012
| IP: Logged |
linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
So glad you got an appt. Will be saying a prayer for you.
Keep us posted.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
But what about the risk of further fractures while not in the hospital?? Not that anyone loves being in the hospital, and least of all us. I guess you will be moving very minimally now. I just worry about your spinal chord, and also further fractures. It sure seems to me that you should be in hospital while they do your work up and get you stabilized.
I'm glad we heard from you. I thought either you were finally sleeping and resting a lot, or were possibly in the hospital.
Those are beautiful prayers from Silverwolfi.
Oh, and, yes, take what pain meds you need and get more soon. That much pain is destructive. You need to rest and sleep.
Docluddite is right both about the vitamin D and the calcitonin. You should try for quite high vit. D levels, like 75 or 80, even though that is higher than the usual lab ranges.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by docluddite: A medication that...has been shown to relieve the pain of compression fractures, is the hormone calcitonin, and it comes as a nasal spray.
Don't let them put you on the 50,000 IU vitamin D protocol if your vitamin D level is found to be low, you will need D3, the 50k is D2. Start D3 low and go up slowly.
I just found this: Quote: Magnesium helps to regulate calcium transport and absorption. By stimulating the secretion of calcitonin, it aids the influx of calcium into bone and promotes optimal bone mineralization.
This looks like low magnesium is part of the problem of why we lose calcium from the bones and get osteoporosis.
The Lyme bacteria depete our bodies of magnesium, as they use it themselves. The body draws calcium from the bones to make up for the loss.
Doc Luddite, I have a family member who just took the 50,000 IU dose of D2 over the winter. Is there anything she can do about it now?
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
| IP: Logged |
nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
Thanks Silverwolf for the prayer..
But does this CR-P just never end?///
To others...is it Lyme related ,,is it meds
They say don't take calcium ,which may not of had anything to do with this .....
But Get some Mag shots from LLMD after this is over...
What's up with the D2 I took it for a while then found D3 drops..told to take then not and I'm only 38 on blood test..
I have back pain ,BUT i THOUGHT i KNEW WHY now I wonder
Posts: 2563 | From Denver,CO | Registered: Aug 2011
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Good luck to you, Sammi. I hope you feel better soon!
Thank you to DocLuddite, too!
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
So I finally saw my PCP today.
I went from 5ft 4.75in to 5ft 3.25in I've always been the small one in my family, now I'm even shorter! Oh, this just broke my heart even more.
My PCP is very nice, not judgmental about the Lyme or any of my other crazy medical things that have since popped up. He just kinda shakes his head in disbelief and asks if someone has written a book about me yet. Essentially my LLMD has written a book of office notes on me...
So thankfully my PCP was willing to refill my RX for pain medication, though at a lower dose. He really didn't want me to be taking it. I kinda have no choice if I want to continue eating, drinking, and breathing. I consider those activities life sustaining.
He also recommended some tests that he wants my rheumatologist to order. I have an appt with my rheumatologist wednesday, he has a special interest in osteoporosis so my PCP felt comfortable allowing him to do the DEXA scan and most of the diagnostic testing.
I asked if he thought that the neurosurgeon would be able to fix my spine since I have been having pain since Jan 31 (that's when I had my last appt with PCP's wife). He said he didn't know. Said he hoped that they would be able to do the kyphoplasty and restore some of my height and stabilize my spine without major surgery. Said he didn't want to see me have any other kind of major surgery to straighten my spine. At least he was honest. The idea of surgery still scares the daylights out of me. I don't like the thought of anyone touching me, especially my spine! Yikes!!!
I had my MRI and a whole bunch of x-rays of my cervical and lumbar spine done on Saturday. Went to a hospital that was supposed to be in the neurosurgeon's digital network. Well, apparently they told me wrong. Multiple phone calls and now my mom has gone to pick them up to bring them to the doctor's office. Hopefully he will look at the MRI and x-rays sometime tomorrow and give me an appt. I really need an appt soon! I can't handle the pain.
Thank you friends for your continued prayers. Please pray with me that God will work everything out so that I can have an appt soon. That he will protect my spine while I wait so that I will have no further injuries or damage. That He will also bless the doctors as they come up with a treatment plan, guide their thoughts, hearts, and hands to best help me.
Thank you also for your suggestions. I am taking some supplements that should normally support bone health. I take a good multivitamin by Thorne with calcium + other minerals. I take lots of magnesium (a mix). I drink at least 1 glass of milk, often 2 per day. Take 2,500 IU vit D3 + K2 per day.
My last vit D levels were 60. My LLMD said that was perfect. They were 80 about 6mo ago and he had me lower my dose of D3 because he said that was too high.
So that's what's going on with me. Still hurting but trying to hang on.
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
sammy, thanks for the update.
I am glad things are moving along, but I hate that you have been having pain for so long!
It is good that you will have further testing done on Wednesday. I wonder if there is there any way the rheumatologist can call the neurosurgeon to maybe get you in right away? Or maybe once the neurosurgeon sees your results, you will get in quickly.
Prayers continue for you. I hope the pain meds give you enough relief until you can be seen.
Hang in there, okay?
Posts: 4681 | Registered: Oct 2000
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
OMG. this is crazy that the neurosurgeon hasn't seen your test results yet, and that you don't even have an appt yet!! I still think that you should be in the hospital with everything completely expedited (much as you are scared of being in the hospital). This is an emergency for Pete's sake!! When are they going to get it!??
Call the neuro's office first thing tomorrow and make sure that he sees it ASAP and that you get an appt immediately. If not, sorry, you need to go back to the ER and demand to be admitted. (by crying and letting them know how much pain you are in, and what is going on with no response from the neuro). I know you don't want that, but this is crazy. you can't wait.
Oh, and get the Rheumy and the Ehlers Danlos docs on board and calling the neuro to get things in motion IMMEDIATELY!! That may be the most helpful of all. Don't wait until Wed. to get the Rheumy to know what is going on and to contact the neuro. Time is not on your side. This must be handled NOW---before it's too late for the kyphoplasty.
Praying for you. Keep us updated. Lord have mercy!
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
*Update 3/20/12*
I finally got an appt with the neurosurgeon! He wants me to get a Dexa scan before I see him though.
The nurse said that this test is necessary for him to know if my bones would be strong enough to withstand any surgical procedures. So the earliest I was able to schedule my appt for is next tuesday 3/27.
I will go see my rheumatologist tomorrow and get the Dexa scan done as soon as possible. Hopefully those results will be good.
Before today I had not thought of the possibility that the neurosurgeon might refuse to treat me based on Dexa scan results. That worries me. I can't imagine living with this pain. I'm too young to have my spine permanently curved like an old woman. I imagine leaving this deformity/damage untreated would only lead to more back pain and destruction.
Thank you all for listening and praying for me. I feel like you all are really the only ones that care right now.
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
posted
Oh my. I am so sorry you have to wait even longer. I will pray, pray, pray.
Keep us posted.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
All the best to you, sammy! I hope you get through this quickly.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
You are in my thoughts too. I hope the surgeon accepts you and you can get over this quickly.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Praying for you, sammy!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
sammy, thanks for the update. We do care.
Why would you think the neurosurgeon would not treat you? Please do not think about this now.
Good luck at your appointment tomorrow, let us know how it goes.
Good luck on Tuesday too. Keep us posted.
Posts: 4681 | Registered: Oct 2000
| IP: Logged |
Did your chiro read good quality imaging studies prior to the adjustments?
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
| IP: Logged |
Hubby's PCP has the DEXA machine in his office. The machine actually has software that writes the report. And it is supposed to be able to compare prior scans if the machine is programmed correctly. Hubby's doc did not have that programming set up but both scans were done on the same machine and the reports are in the same format.
Ask about getting a copy of the written report and there might be an option of getting something on a disc as well.
I would push for getting the report ASAP and maybe you could have someone hand deliver the report to the neurosurgeon and get a quicker appointment.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
posted
You're on my prayer list.
Posts: 331 | From West Coast | Registered: Jan 2012
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Argggh! This is just unreal! There must be a place where you can get the DEXA scan same day on an emergency basis!! What about the local hospitals?? You or your mom could do a search (or ask the surgeon's office for a list) of places that do it, and call until you find one that can do it immediately. Can't the surgeon order it done on an emergency basis at the hospital?? you can not afford to wait! Yeesh! Leave no stone unturned to get this right away.
Did the neuro see your MRI films, etc. already? Doesn't he realize that this is an emergency?!! It's all stunning.
Love and prayers to you and your family. But, please, don't slacken now (not saying that you would!). I just want to encourage you to get this scan done right away. I'm sure there are lots of places to get it done.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Eek!]](eek.gif)
![[group hug]](graemlins/grouphug.gif)
![[Smile]](smile.gif)
Have 3days worth of Vicodin to help me through. Trying my best to get a good neurosurgeon. Was told that may have to wait another week or 2...
![[Frown]](frown.gif)
I've always been the small one in my family, now I'm even shorter! Oh, this just broke my heart even more.
Printer-friendly view of this topic