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Arkiebrat
New Member


Date Joined Sep 2010
Total Posts : 8
   Posted 9/24/2010 5:05 PM (GMT -6)   
I joined today after reading off and on for a week now. Just had to have a place to vent where no one would say my pain was "laziness".

I have had problems with my hip for years. But in the last year or so, I have good months followed by bad months. Sometimes I wake up (when I do sleep) wanting to cry from hip, knee, and shoulder pain on the right side. Last week my joints hurt so badly that I couldn't completely close my right hand into a fist.

I sleep maybe two hours a night, four if I'm lucky. I've got hair loss at a level that brushing my hair means throwing away a wad of hair the size of a golf ball. In the last two months I've lost 16 pounds without dieting or exercising, and I've lost a lot of my sense of taste (I can taste spicy or strongly flavored foods, but things like cereal or toast are like eating cardboard.)

I made a doctor's appointment and in the office she was considerate. Wrote me a prescription for meloxicam 15mg and said it was a "starting point" since she felt my symptoms indicated either osteoarthritis, RA or fibro, with lupus or thyroid as an outside contender. They took a hip and pelvic x-ray that showed everything clear, and about six vials of blood.

I started the meloxicam prescription and it feels about like taking 2 ibuprofen. I went grocery shopping one evening and halfway through the store had to stop because of pain (this was while taking the meloxicam). That night my pain levels were elevated and I did not get any sleep at all. Last night while kneeling to bathe my daughter, I was in such pain I couldn't get up out of the floor and my 16 year old son had to lift me.

I called the doctor's office to explain and the nurse checked my bloodwork and said the rheumatoid factor had tested negative (she didn't give me the rest of the results on the phone as they require you to come into the office or wait on them in the mail), but I assume nothing alarming since what they suggested was physical therapy. I went through 12 weeks of PT two years ago that did absolutely nothing for the joint pain (and the back pain I was having also at the time ended up being my gallbladder). So the nurse suggested a referral to a hip/spine specialist. They are supposed to set that up and call back on Monday.

But on the pain issue she says that since the next step is narcotic pain relief, I have to simply deal with the meloxicam until they "prove" there's something that merits narcotic pain meds. (I went thru this during the gallbladder period where they gave me ineffective pain meds that nearly landed me in the ER.)

Edit to add - I forgot to add in the thyroid. I was diagnosed with thyroid cysts about 10 years ago and had an endo following them who recommended regular ultrasounds. They have set one up for next Friday since I hadn't had one in a few years.

I spent 24 hours of a 36 hour labor unmedicated and went through some major gallbladder attacks. I know pain levels. Right now I'm a very miserable 8 out of 10 and I'm so tired of hurting and not being able to do anything with my kids.

It's so odd that all the pain is exclusively on my right side, to me. My left side is completely pain free. I feel like the Joker from the Batman series.

Any ideas that I can start tackling from those who've gone down these roads before me? I'm just at my wit's end and if I change doctor's I want to go in armed to the teeth on info. I had to diagnose my own gallstones, after all.

Post Edited (Arkiebrat) : 9/24/2010 5:22:12 PM (GMT-6)


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/24/2010 6:20 PM (GMT -6)   
I'm new to chonic pain too. I suffer from hypothyroidism. Are you Hypo or Hyper?
You may have a pinched nerve.
Joy

Arkiebrat
New Member


Date Joined Sep 2010
Total Posts : 8
   Posted 9/24/2010 7:53 PM (GMT -6)   
The doc said that if it's my thyroid, she thinks hypo based on symptoms. The goiter to me feels more enlarged lately but that's hard to judge. I have also in the last few months started having a really gross reaction to eating. If I eat more than a handful of food (say half a cup serving of anything), mucus starts just pouring down the back of my throat. Then I have to cough it up and it feels like I'm drowning. I have literally coughed so hard I threw up at times when I couldn't get it to stop fast enough. Doc would like to consider an upper GI when we get the rest settled as to what is wrong but in the meantime said to eat tiny tiny meals to try to avoid triggering it. (The type of food does not seem to matter, but the quantity.)

My mother has had Graves disease (her thyroid was irradiated completely), has fibromyalgia and RA. Her sister has RA, as does that sister's only daughter, and one of my mother's paternal great-aunts. My maternal grandmother has osteoarthritis and has had 4 hip replacements (3 right side, 1 left).

A pinched nerve hasn't been ruled out, but it would be odd for one nerve to affect hip, knee, shoulder and occasionally hand, I think. Different nerve branches, right?

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 9/25/2010 8:15 AM (GMT -6)   

 

  Hello Arkiebrat!

   I just wanted to stop by and Welcome you to the Chronic Pain forum.

  Sorry, I cant be of help to you, with your problem, but I'm sure there is someone who may have some experience with this condition.

     Take care,

       SE wink


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16024
   Posted 9/25/2010 11:10 AM (GMT -6)   
Hi Arkiebrat and welcome to Healing Well's chronic pain forum. Wow, you really seem to have many things going on at one time with medical issues. Usually when that happens the drs will only tackle one thing at a time. I know it is frustrating when that happens. It happens to me all the time. My drs tell me I save up and come in with multiple problems just to make them work harder, lol. I cannot tell you what its like to go in with one problem only because it has never happened to me. I think for the thyroid situation I would ask to be referred to a endocrinologist and let them deal with that problem.

How long have you been a patient of this PCP's? Most will not rx much of anything especially if you are a new patient. One thing I can tell you is they do not hardly ever write scripts for pain medication and if one will it is usually for 10 days only if you are lucky. You see the drug seekers have ruined it for people with CP and that's why we are forced to see PM dr to get proper care. I do not know what the medication is you spoke of assuming its the generic form of something. It may well be worth your time and effort to get in to see a rhuematologist and get checked for Fibro. I think you would know enough of the symptoms of RA to know if that was going on with you since it runs in your family. Yes, people can have pain on just one side of their body it does not have to involve both sides. Granted none of us are drs here, all we can do is suggest and say this is maybe what I would do if I were in your shoes. You may want to schedule another appt with the PCP and go back and let her know this medication she gave you is ineffective. Phone calls rarely get you anything from a drs office especially pain meds. Since you are fairly new to the area of dealing with drs offices and pain medications it is really difficult to get help with pain and only going to get worse over time. But the bottom line is drs do not want to get involved with patients needing pain medications because they don't want the DEA breathing down their necks, the cost of mal-practice insurance has caused some drs to close their offices because they can't afford the premiums and again we can thank the drug seekers for this. Being under the care of a pain mgt dr is how we get the necessary pain medications to be able to have some sort of life. But even that comes with a heavy price. People look at us like we are abusers too.

Anyway, I wanted to say welcome aboard and I hope you will keep posting to let us know how you are doing. Susie

spinal soldier
Veteran Member


Date Joined Dec 2009
Total Posts : 687
   Posted 9/25/2010 1:29 PM (GMT -6)   
hey Arkiebrat, from the sound of your username i would say you maybe are from Arkansas, i am, Russleville. anyway you have quite a few symptoms that could fit under many ailments or syndromes. Rheumatologists and neurologists seem to be good diagnosticians. the uni-lateral part you describe is weird and makes you think this is a brain/nervous system deal. i think if you had straight RA or fibromyalgia you would have bi-lateral symptoms/inflammation. lupus is auto-immune inflammation that would more than likely not present in multiple areas just on one side. i'm sure your family history comes into play here but might not be a absolute indicator because you may have more than one thing going one? a friend of mine presented in a similar way with Lyme-disease. the mucusy thing when eating almost sounds like heavy metal accumulation [mercury,cadmium]. and with your thyroid added in, it may be connected or not so i would maybe set up appointments with a endocrinologist,neurologist,and a rheumatologist and maybe even a orthopedic doctor to try to nail down a diagnosis. sometimes internal medicine doctors are great diagnosticians. it's true or at least i think it's true that there are no MD's on this forum, but i am a very few credits short of a degree in pharmacology which that and a dime will get you a cup of coffee, but i have had practical experience with chronic pain and psychotropic drugs. for your doctor to tell you that the next step is narcotic pain meds but i can't give them to you because we don't know exactly what the source of your pain is when you translate it: i'm don't ever perscribe pain meds and when i do it's the bare minimum. if you have that severe pain you should be perscribed opioid meds along with something like meloxicam which is the generic version of Mobic. Mobic/meloxicam is a non-steroidal-anti-inflammatory that is a off-shoot from the "oxicams" class [Feldene/piroxicam] thats main advantage is it shares the qualities of Celebrex/celecoxib, Vioxx/roficoxib, and Bextra/valdecoxib in that it tends to be easier on the stomach lining but it's also not the most effective on pain and inflammation. you could ask about Relafen or Daypro because they are pretty good at reliving pain and inflammation and not to bad on the gut. Arthotec is very good on pain and has a added stomach mucus lining protecting agent. but with pain on the level you have it needs to be in combonation with a opioid based pain killer. best of luck to you and i hope you are able to get a solid diagnosis so you can eliminate your pain.
L4,L5,S1 bilateral Laminectomies, Foraminotomies 2002
L4-S1 PLIF with instumentation 2008,

current Rx: OxyContin 60mg 2x, Dilaudid 8mgs [brand] 4x p.r.n. brk., Phenergan 25mg 3x prn nausea, Lyrica 75mg 2x,Adderall 20mgs 1x A.M., Soma 350 mg 3X, Relafen 1000mg 1x, Klonopin 1mg H.S. or prn anxiety Supplements: CO-Q10 100mg, Vitamin D 2000IU, Fish-Oil1000mg EFA, B-Complex50 3x/day, GABA 750mg

Arkiebrat
New Member


Date Joined Sep 2010
Total Posts : 8
   Posted 9/25/2010 11:03 PM (GMT -6)   
Lyme Disease is something a nurse friend wants me to ask to have them check for because he felt the symptoms seemed really close. And yes, I am from AR and back in the day we used to hike a lot. I am also allergic to insect bites (mosquito, ant, flea, tick) so I swell up and get big knots when bitten. I know I had a tick on me earlier this summer for just that reason (made my belly near my belly button where it bit me too painful to wear jeans for 2 days). I'm sure I've had others get me too that I don't remember any more.

The PCP is one I've seen before, and she did the pain med thing to me when I was having the severe gallbladder attacks. Gave me something I'd had before for c-section pain and it had felt like taking sugar pills, but forced me to try it. It didn't work (wasted that copay) and it took pain so bad I was vomiting and my spouse calling to ask if he should take me to the ER before she'd give me something else. (Ironically, what she gave me was twice the dose the surgeon gave me for post op and all I needed was half the surgeon's dose.) At that time the surgeon told me if I hadn't gotten online and put my gallbladder symptoms together when I did it would have burst on me within a few weeks because it was completely full of 1-2cm stones.

I will take notes on the mentioned meds because I've had to browbeat her before. The way the nurse said stuff it seems like they are worried about my insurance more than my treatment plan. A friend with fibro told me i also might try asking about etodolac and ultracet as a combo since that's what she takes to stay off narcotic pain meds but says she has to have both.

What really makes me want to scream is that the spouse's PCP (same office) will throw pain meds and flexiril at him at the drop of a hat, but refuse to look into why he keeps having shoulder/neck pain (took a chiro to diagnose a herniated disc). Mine seems willing to run a gauntlet of tests but not to treat the pain. I just hope the hip/spine specialist is a good one. I wish my grandmother had used one in LR. She has one she swears by in Texarkana but that is too far away.

I work full time and I'm taking 15 hours online in college this semester and it's just hard to keep up; two nights this week I got no schoolwork done because by the time I finished work, I had no energy or pain tolerance left.

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9661
   Posted 9/26/2010 10:33 AM (GMT -6)   
Do you have the test results yet from all the blood work?
Low b-12 can cause hairloss and if that was not tested for then
maybe try a supplement to see if it helps...Straydog gave you very good advise...
but it can still be RA, there is a seronegative RA, my bloodwork came back
good, but my hand mri show damage, so my rheumy thinks it's RA..
Just some idea for you to consider...make your appointments for around
your class breaks, you get a Christmas break...I schedule my daughters appointments
around her class breaks she in college too.....it can be hard but you need to get these done.
Good luck to you and I hope you find good doctors...keep us posted..
(((((((((((((((((((((((((((Arkiebrat))))))))))))))))))))))))))))))))
lots of healing HUGZ
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3689
   Posted 9/26/2010 10:48 AM (GMT -6)   
Arkiebrat

I want to Weldome you to Healing Well Chronic Pain Forum, I am glad you decided to sign in and join us! No You will not be told you are lazy or anything else! We don't judge you! We all know what it is like to live with chronic pain, and most of us know what it is like to deal with Doctors who do not adequately treat you for your pain! I can assure you that when you come here to this forum, that you are never alone with your pain! We might not be able to fix you or be that much help in getting rid of your pain, but we can and will listen to you and share in your frustrations, and who knows maybe in a very small way that might also be of help to you!

You know Arkiebrat, that just because nothing showed up on the x-ray of your hip does not mean that nothing is wrong with it!. If you have problems with the cartilage in your hip an X-ray will not show that, you would need an Arthrogram and or a MRI to really show what is going on with your hip. I only can suggest that you keep pressing them for answers. I also have hip pain,and have been fighting the doctors to get it taken care of. I have had the test and I know what is wrong with it , but I need to find a doctor or surgeon that will do something to fix it! Anyway I do hope that you can get to the bottom of your hip problem and get adequate treatment for it! Just remember, you can come here and vent your frustrations anytime! We all know how frustating it can be! Your not alone any longer with your pain!

I do wish you well!
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!

grainofsalt
Regular Member


Date Joined Aug 2010
Total Posts : 215
   Posted 9/26/2010 11:04 AM (GMT -6)   
I am by no means an expert, but your symptoms sound identical to those of LUPUS.

Also, anti inflamatories are wonderful medications, but it generally takes days of solid dosing to get true benefits from it. Personally I love presnidone, but I know the risks are high if taken for an extended period of time. Celebrex and the Cox 2 simulates do have an effect on pain, but honestly I'd almost rather just deal with the stomach issues and take some asprin :)

Spinal is 100 percent right. You really need a combination. A opioid alone is going to help a lot with the pain, but when it comes to severe inflamation, you can still "feel" the effects, so you need to treat the symptoms to get them under control. However, as I stated, it can take a while to get flare-ups under control, and even after they are under control, reduced pain is not the same as no pain. Some people can get by with tylenol and caffeine, but some of us require professional grade help, which is where opioids come into play. Keep in mind that opioids when used properly have a very low risk of addition when used by people with chronic pain, not to mention people who use them for chronic pain are often more aware when a problem is happening. Studies confirm the first statement. However, thanks the the "seekers", primary care doctors want PROOF that you require them, and even then are very limited in what they prescribe. THIS is why you need to see a PM doctor. If your primary care doctor is respectable, he can reffer you to a full spectrum PM doctor that can offer a wide range of options. PM doctors are specialists in that they deal with chronic pain cases on an everyday basis, so when a "seeker" comes along, the doctor can weed that person out, while providing proper relief to his "patients." PM doctors have the power to prescribe power medication because they have control authorizations like pain contracts, required monthly apointments, and tests to ensure the medications are being used properly. PM doctors can also perform minor surgical procedures, and perform non opioid pain treatments as well such as epidural shots. MOST insurance plans nowdays have much better coverage and entitlements for pain management then they did 10 years ago. In fact, my PM doctor is a part of the IN-DOCTOR network and therefore my costs are never more than 10 percent, and are sometimes are less than 10 percent (example, the co-pay for my Min invasive surgery was only 18 dollars). Having good insurance and if possible an IN-NETWORK doctor is a huge help in having a good PM program. In-Network doctors are a big help when it comes to prescription pre-authorizations. :)

If you aren't covered, or are looking to be covered, I'd HIGHLY recommend Cigna Pro Plus open Access. Even if you have to pay out of pocket, if you use it like I do, my monthly premium is roughly about 1/6th the cost of my actual medical bills
MRI revealed a bulging disc w/gel lost at L5 and showed the bulge touching nerves, causing sciatica. Diagnosed w/ Arthritis which is responsible for joint inflamation pain. Treatment: Nucynta 50-150 mgs every 6 hours (schedule II narcotic, Mu Opoid agonist and NE reuptake inhibitor), Celebrex 100 mgs, Klonopin .5, Epidurals, Radio Freq nuerotomy (sept 8th, 2010)

Arkiebrat
New Member


Date Joined Sep 2010
Total Posts : 8
   Posted 9/30/2010 3:58 PM (GMT -6)   
Update! (Thanks everyone! Pain and schoolwork sidetracked me but I appreciate all the info)

Yesterday the PCP's office called asking if I could possibly manage the hip specialist today since he had a cancellation instead of waiting 3-4 weeks. So I scrammed to get my x-rays and got there this morning.

He was very kind and thorough. Went over my x-rays with me and noted an old pelvic issue that prompted him to ask if I'd ever been able to give birth without a c-section (nope!). But he agreed that my joints on x-ray were clear and suspected a possible pelvic issue at first and had me do a lot of walking and bending. When he went to manipulate the joint, he grabbed a really sore spot and I yelped.

We switched gears then because he said something that sore there was bursitis. So he prodded a bit, making more yelping happen, and decided to try a cortisone shot in the sorest area. He also said on doing the injection that he agreed with my pain scale because I didn't react to the needle stick or injection at all and most patients squirm at least. After five minutes I was able to walk around with less pain and after ten they let me go home with a followup in 4 weeks.

He told me to keep trying the meloxicam to reduce inflammation and to make sure I get the thyroid scan done because he thinks my other symptoms sound like thyroid issues (especially weight loss, hair loss, insomnia, and cold intolerance) and that thyroid disease is a cause of bursitis in non-athletes.

If I still have pain in a few days or it escalates again (I'd say it's about a 5 now, feels like I climbed a mountain one legged) to call because he'll try oral corticosteroid but wants to see if it'll heal without them.

I'm supposed to rest up, don't overtax the hip, and try ice when I can tolerate the cold.

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 10/1/2010 9:10 AM (GMT -6)   

 

 

 Hi Ark!

   Just wanted to stop by and say "Hello and Welcome!". My name is Dani and it is very nice to meet you. I am terribly sorry for not stopping by sooner. Things get busy at my home and half the time I don't know if I am going or coming!

     I am so sorry to hear that you are in so much pain. I do not know much about "thyroid" problems. I have something called "Inherited Hypoparathyroidism" and "Low parathyroid absorption". The "problems" that come with them are difficult to treat. The combination of the two have done considerable damage to my body. Most of it was irreparable. I do hope you are able to find a good endocrinologist. There are so many treatments for endocrine disorders but they take time to test and begin treatment. The wide range of symptoms you have could very well be from thyroid problems. So, I really hope you can get to the bottom of things quickly.

    It is very nice to meet you and I look forward to knowing you better as time goes by.

*hugg*
  dani


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

Chronic Pain Moderator
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Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9661
   Posted 10/1/2010 12:17 PM (GMT -6)   
I agree with Dani, try to get a good endocrinologist...
They'll put you thru a lot of bloodwork, just a heads up...
and if there is something they'll find it..
((((((((((((((((((((((((((((((((((Hugz)))))))))))))))))))))))))))))))))))))
sometimes it's a long wait for an endo, so get making that appointment now..
for sometime during your Christmas break,,,It took me two months to get into my endo, but he's good...
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16024
   Posted 10/1/2010 3:41 PM (GMT -6)   
Hey Ark I am glad you were able to get in to see the dr for your hip. I can sympathize with you on the bursitis, I get it in my left hip. I do know it can be extremely painful and very difficult to walk once it gets out of hand. My PM dr gave me a shot of Toradol since I cannot tolerate steroids and that really did get it to settle down, I do hope this injection will work for you. To me bursitis is like an old nagging tooth ache.

When are you having the Scan for your thyroid? I hope that is soon so you can get to the bottom of things.

Hang in there and take care.
Moderator Chronic Pain Forum

Arkiebrat
New Member


Date Joined Sep 2010
Total Posts : 8
   Posted 10/2/2010 9:56 PM (GMT -6)   
hey all... I spoke too soon on not hurting. A short walk thru the farmer's market (half a block) and taking my daughter through the library with frequent rest stops ramped the pain level back up to the nausea point again. Made the mistake of eating supper... never good the "second time" when it comes back up.

I took the useless meloxicam (still taking it) to see if it might at least take the edge off but no go.

I have these funny bruises on my affected hip that were really kinda disturbing Friday until the spouse realized they look like thumbprints where the hip doc was poking to try to find the most painful spot. My hip looks like an eggplant a bit right now.

Got my blood work "results" in (HAHAHA!) and it's just a card that says "Labs OK except for: Vitamin D too low - need a prescription - please call". I'm about ready to throw in the towel on my PCP because I'd like to have more info but I have to pay extra to go in and see the actual results which is ridiculous. I will call the hip doc on Monday and ask him what I should do when I can't do simple walking... some stuff I read seemed to imply I might want to try crutches or a cane.

The thyroid scan is Wednesday afternoon.

In one blessed "perk" to the whole mess - the nicer of my two bosses gave me the company office depot card and told me to go test out chairs and get a better one, plus a printer for my desk that makes copies so I'm not having to limp up and down the hall all day long.

The college stuff is frustrating because I'm taking all the courses online and I'm having such trouble concentrating that my grades are suffering.
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