DESPERATE. Please tell me if this has happened to you. UNBEARABLE. Cant take much more.

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BluAngel
Regular Member


Date Joined Feb 2011
Total Posts : 346
   Posted 4/20/2011 10:29 AM (GMT -6)   
I have addisons/fibromyalgia/ dystonia/spinal-cervical stenosis/complete gastrectomy 2005/anx/panic/pernicious anemia. Had med probs most of my life but something DIFFERENT is happening to me and Ive seen a multitude of specialists and no one can help me or dx it. 2 mos ago the joint where my L leg/hip join began hurting when I put weight on it. Since then its gotten worse every day, Im on crutches and in unbearable pain every moment. It feels like the bone in there is broken but tests say no. Sharp n throbbing. Swells at times. I cannot imagine what can cause such tremendous pain and they cant find it. MRI, CSCAN, XRAYS, DOPPLER, STEROID INJ. Has anyone ever had this happen to them in a leg joint or any joint? Cld it be radiating from higher up? I cant stand much more. I cry trying to just get into the bathroom. I have pain meds n muscle relaxers n still its unbearable. Cant work, sleep, eat. ANYBODY have an idea? PLEASE!
A friend is someone who, when you have forgotten your heartsong, can sing it back to you.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16284
   Posted 4/20/2011 10:59 AM (GMT -6)   
Hi BluAngel and welcome to Healing Well's chronic pain forum. I am sorry that you have to be here but glad that you found the forum. It really sounds like you have been put through the ringer and still no answers, it is so frustrating when this happens to us. My first thought was bursitis in the hip but that is something even a PCP can pick up on and usually something they look at immediately with a painful hip. I do know you can have hip pain which can result from the lower back, but you say all of the tests done so far has revealed nothing, My other thought would be MRI's done with contrast, sometimes the contrast helps pick up something missed on the regular MRI. Keep in mind none of us here are drs so we cannot dx your problems, just throw some ideas out.

You know sometimes when a patient cannot get answers from their regular drs they will go to one of the teaching hospitals and usually they can figure out what is causing the problem or problems. If you will look at the top of this page at CP101 you will find a list of teaching hospitals and I hope there is one close to your home. If they are able to pinpoint what is wrong and how to treat it, many times they are willing to work with your regular drs in terms of treating you.

Anyway, I wanted to pop on here and tell you welcome aboard. Please keep us posted on what you find out.
Moderator Chronic Pain Forum

Screaming Eagle
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Date Joined Sep 2009
Total Posts : 5005
   Posted 4/20/2011 11:43 AM (GMT -6)   
 
 
          Hello BluAngel!
 
           Welcome to the CP forum!
 
                I can certianly hear the desperation in your post here to us. There are times that I think there is pain and then there is extremely intense body rocking pain, and it sounds like you are suffering this.
 
       I do not have any ideas, and you have a number of DX's that could be contributing to this. Have you gotten any second opinions on any of the test?...or have you seen more than one specialist?
 
     I see that you have mentioned being on pain med's, but which ones are you on?... and have you gone to see a PM (Pain Management DR) yet? While they are looking for the culprit to your pain, there is no reason for you not to be treated properly when it comes to Pain Magagement. You may find other med's that will give you more comfort than what you are getting at the moment.
 
          So sorry to hear of your medical problems, and especially the pain that you're in.
 
   Please do keep checking back in with us to see what other members have to offer in the way of advice and support.  
 
                Take care,
 
        SE wink   
 
 
 
"The clock is running. Make the most of today. Time waits for no man. Yesterday is history. Tomorrow is a mystery. Today is a gift. That's why it is called the present."

left forum.
Regular Member


Date Joined Jul 2010
Total Posts : 200
   Posted 4/20/2011 11:47 AM (GMT -6)   
Hello,

I'm sorry I don't have any answers for you but I just wanted to post to say I am so sorry you are going through so much and I hope you get some answers and relief very soon!

stay strong

hugs xx
15 years old,
Chronic stomach pain with no diagnosis yet and lots of other things.

When the going gets tough, the tough get going.

spinal soldier
Veteran Member


Date Joined Dec 2009
Total Posts : 687
   Posted 4/20/2011 3:58 PM (GMT -6)   
has anyone mentioned it may be related to stenosis and is a neurological symptom? what levels are your stenotic areas? have they done any films of your lumbar spine? have you had a decompression surgery due to the stenosis?
L4,L5,S1 bilateral Laminectomies, Foraminotomies 2002
L4-S1 PLIF with instumentation 2008,

current Rx: MScontin 100mg q8hrs. , dilaudid 8mg q6hrs. prn, oxymorphone IR 10mg q6 ,vistaril 50mg prn nausea, Lyrica 150mg 2x,Adderall 20mgs 1x A.M. 10mg PM prn, Soma 350 mg 3X, Elavil 25 HS, diazepam 10mg bid prn, Supplements: CO-Q10 100mg, Vitamin D 1000IU, Fish-Oil1000mg EFA, B-Complex50 3x/day, ALA

Fyrfli
Regular Member


Date Joined Jan 2011
Total Posts : 41
   Posted 4/20/2011 5:05 PM (GMT -6)   
I wonder if this is a nerve issue that is going on? Sounds very similar to something I deal with daily, and BluAngel I am so sorry to hear this! Is the pain radiating? Mine goes from inside of my hip joint, all the way down my leg and foot. Like sciatica. I have no answers for you, but hope someone does for you soon.

(((((HUGS)))))
***Fyrfli***

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 5004
   Posted 4/20/2011 5:30 PM (GMT -6)   
I had hip pain and electric shock-like pain radiating down to my toes that wasn't fixed with lumbar steroid injections. Monday my pain doc injected my tail bone, right at the end of it, and when I stood up the pain seemed to be gone. It's still gone today. My tail bone hurts quite a lot still, but it's so much better.

I would be asking about getting an MRI of the lumbar spine and sacrum.
Alcie
 
 

BluAngel
Regular Member


Date Joined Feb 2011
Total Posts : 346
   Posted 4/20/2011 6:29 PM (GMT -6)   
Thank u 4 the replies & ideas. MRI was w/o contrast, xray showed no fracture in sacral area (I think it cld be), stenosis is cervical, have had sciatica b4, sacral joint was acting up 4 a month a cpl of mos b4 this started, seen 6 to 8 specialists. Have great neuro & doing epidural Monday. Going 2 Mi May 4th 2 see specialists there. Take hydrocodone 5/500 3X daily, 75 mg fentanyl patches, klonopin, dexamethesone, trazedone, BC powder. It began in leg/hip joint but since trigger point inj in it now runs down back of my leg 2 calf. Nvr had surgery on neck/spine. After being upright 2 long twice leg turned blue, swollen up til I thought itd burst. No clot tho. Had ovr 20 diff surgeries in my life, dealt w/ a lot of pain but NEVER like this. Laying flat cant lift it up. Broke knee cap twice & arm in my life. Gotta be bone & nerve. Must be frm higher up? Just cant understand how something this painful cant b found. Definately "body rocking". Any thoughts sooo appreciated! I know u understand. HUGGZ
"The world breaks everyone. Then some people become strong at the broken places". E.H.

"Out of suffering emerge the strongest souls. The most massive characters are seared with scars". K.G.

solar powered
Veteran Member


Date Joined Nov 2007
Total Posts : 538
   Posted 4/20/2011 7:02 PM (GMT -6)   
Hi BluAngel. When I read through your symptoms my first thought was the possibility of femoral acetabular impingement, also known as FAI. From what I understand it is basically a bony defect and in some cases can be difficult to diagnose and not all orthopedic doctors are familiar with it. I have a friend with it and it took her 3 years to get a correct diagnosis. A member here, quahog, just had surgery to correct this issue. Maybe you can search HW for FAI to find posts about it. I want to say that Msbunky has it also and just saw a surgeon about it. Someone please correct me if I have the wrong member. It may be something to google and ask your ortho about if the symptoms seem to fit. I hope that you get an answer and relief very soon.

Lee
Hope and attitude are everything. Never, never, ever give up.

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 4/20/2011 7:31 PM (GMT -6)   
Lee, I think your right on the money with your memory. Good Post!

SE wink
"The clock is running. Make the most of today. Time waits for no man. Yesterday is history. Tomorrow is a mystery. Today is a gift. That's why it is called the present."

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 4/20/2011 9:11 PM (GMT -6)   
 
  Dear Blu,
 
     Good evening  :-)   Welcome to the Chronic Pain Forum. We have a great group of members here. Though I am sorry for what brought you here, it is very nice to meet you.
 
     You have been through a lot in your life. I am very sorry you have to endure through so much pain daily. I am unsure I can help with advise at all. I do get epidural steroids and they help for a short while. I hope they are able to bring down your pain as well. The only thing that crossed my mind was that your MRI was done without contrast. With contrast will be able to tell so much more and might be worth your while. You did mention that you have been seeing various specialists and I do hope they are able to get to the bottom of things.
 
    Again, it was very nice to meet you. I hope you are able to get your pain down enough to get some rest.
 
*hugg*
  dani

TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

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Joeldriven
New Member


Date Joined Apr 2011
Total Posts : 10
   Posted 4/20/2011 11:31 PM (GMT -6)   
Sometimes you can have a tear in the cartlidge that doesn't show on any test. I've had that happen were the surgeon gave up and decided to operate and then found the problem that didn't show on any test.

Joel

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3694
   Posted 4/21/2011 12:42 AM (GMT -6)   
BluAngel
 
Have they done and Arthrogram on your hip? This is where they inject a contrast dye directly into the hip joint and then immediately do a MRI on your hip. This will then show any tears in the cartilage and any deformities of the bone or the hip joint. you could have impingement, but you also  could have Labral tears, or a host of other things. Anyway the Arthrogram MRI would be the best thing to have to show if it is in your hip or not. Also have they tried a steroid injection in to your hip joint, that is also another indicator  if it is your hip that is the problem, I know the last one I had I got about 3 to 5 days of good relief from the injection so the injections do not last but they do indicate that if you get relief that the hip is your problem. If it is not your hip it could be that your pain  is caused by a problem with your lower back. Have they checked that out thoroughly?
 
I do hope you can find some answers to your broblem, Good Luck to you!
 
White Beard
Moderator Chronic Pain
After spending nearly 22 1/2 years in the USAF, I retired in Sept, 1991. I then went back to school and became a licensed RN in 1994, and I worked on Oncology and then a Med Surg Unit, I became disabled in late 1999 and was approved SSD in early 2002!-- DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in Sep 2009, C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications:Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV I am White Beard with a White Beard!
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