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Posted 9/27/2010 2:26 PM (GMT 0)
 

 

Hi all, I usually only post on the Fibro site, but am wanting some opinions, advice, or maybe just some encouragement.

 

It doesn't take much activity to cause my back to ache, sometimes it's intolerable.

My doctor knows I have 2 bulged disks, L3 and 4. I told him how bad it can get, and he only said, well their only slightly bulged. Plus he told me I have some arthritis in my back, but " it's nothing"

 

I just know this pain has caused me to have to limit what I can do on a daily basis.

Doing the dishes always makes it hurt to the point that I can't wait to sit down and lean my back against the back of the sofa, or the headboard of my bed.  I can't sit and lean forward for more than a few minutes because it begins to ache so much! 

I walk as much as I can, but have had to cut way back on it, because of bad hip pain. A ct scan showed degenerative arthritis which I have had pain from off and on since my 20s. However after having  an MRI he said theres no arthritis in my hip. I think hes wrong. He says the hip pain is from fibro, but my hip pain started way before the fibro, plus it hurts every time I take a step, and humid weather makes it much worse, it also awakens me sometimes at night.

 

Any thoughts? Sorry this is long, but it does help to get this off my chest. 

 

I feel like my doctor doesn't have a clue how much I hurt. I am on Tramadol for the fibro pain, it does not touch the back and hip pain though.

 

Thanks for listening

 

Debbie  

 

Posted 9/27/2010 2:34 PM (GMT 0)
Debbie,
Try going for a second opinion from a different doctor, maybe a neurologist and get a emg
testing done...I'm sorry this doctor seems to be a bad fit for you and you should not
have to settle for this..so please seek out some other opinions..
Others will be by with better advise this is a good bunch of people
and remember we can only offer up advise as we are not doctors...
I hope your feeling better soon..
(((((((((((((((((((((((((((((Debbie))))))))))))))))))))))))))))))
healing Hugz
Posted 9/27/2010 3:35 PM (GMT 0)
Hi Debbie, glad you came by to see us. Welcome to the CP forum. Well, what he did is not uncommon these days with drs. Many drs take the position that if a disc is bulged it will not cause pain. I have heard many drs make that statement. They claim pain will not come into the picture unless it is herniated and pressing on a nerve. Everyone knows arthritis can and will cause pain. His attitude would have bothered me too But, that does not mean all of them are that way either. I looked again at your post to if you said what kind of dr he is, so I don't know if this was your PCP or a specialist, lol. My first thoughts are since you have Fibro if you are not under the care of a rheumatologist you may want to consider a consult with one, I know many of the Fibro people see them. Secondly, since you have arthritis this would also be his/her field and you could more or less get a two for one shot to look at these things. You could also perhaps get the rheumy to ref you to a specialist for the disc problem, perhaps a neurosurgeon for a consult. If this was me I would take this road and see where I ended up at. I also suggest that you get a copy of the written reports and disc of the MRI's that you have had done for your own personal keeping. You need to see what is on those reports because many a time a dr will make a comment that an MRI is insignificant leaving the patient thinking nothing showed up when in fact there were some findings. Maybe they are not findings to warrant surgery but a patient needs to know what all test reveal. Any reason you are not not on Lyrica or one of those meds for your Fibro? If this is a primary care physician calling all of these shots with you, you may want to consider finding a new one. This dr really does not sound very interested in you. Anyway, these are my thougths. I do hope that you can get to feeling better. Take care.
Posted 9/27/2010 9:00 PM (GMT 0)

   Dear Debbie,

     Good afternoon. My name is Dani and it is very nice to meet you. It is always so nice to meet other members from Healing Well. :-)

    After I read your post a few things "jumped" out at me.

You Said ~~> He says the hip pain is from fibro, but my hip pain started way before the fibro, plus it hurts every time I take a step, and humid weather makes it much worse, it also awakens me sometimes at night.

Any thoughts?

     Have you ever had a bone density scan?  "Bone pain" is a deep flu-ish ache. It hurts and it flares. It might be worth checking into.

 

      Also, though I do hear what your doctor means by "mild" arthritic... it still hurts, you still need anti inflammatory or steroid. For my hips I take a medicine called "Relafen" aka Nabumetone. It is specifically for my hips. Sure my other pain meds and muscle relaxers help.. But the Relafen gets me moving in the Hips. Gets deep in there.

 

     For kitchen tasks my husband bought "bar stools" for me and cut them down to "hip height". I highly recommend it. I cant stand and cook and do dishes. But, I can sit and do dishes, peel potato and carrots... you get the idea.

 

    It was so nice to meet you. I really hope you are able to get your flare down to somewhat manageable levels. It sounds like the flare, pain and inflammation are just plain wearing you down. Stay strong!

 

*hugg*
   dani

Post script.

     I nearly forgot. One other little creation is "Arnica Gel" it is an "herbal (natural) anti inflammatory". I use the cream on my hips. Ben-Gay..and other "creams" have "Icy / hot" effect, which is nice... but I need something to bring down inflammation. Arnica does just that. 
Posted 9/27/2010 10:45 PM (GMT 0)
Hi.
Glad you posted. Gosh, doctors can be so frustrating! Have you seen a pain specialist?

It sounds like what your doctor was very unsympathetically saying was that the identified problems were not likely the source of your pain. Many people have slightly bulged discs without severe pain. So on a very "textbook" level, it makes a bit of sense to me & I heard it myself for many years. My pain got worse & worse and all I would get was that same statement that just sounded dismissive to me. Doctors hate admitting that they don't know something & when I finally found a doctor who was humble & honest enough to say "I don't know what is causing your pain but I believe you are in real physical pain and I want to help you manage that", it was life-changing.

Pain Management Specialists can be a godsend. They aren't looking to cure anything, but rather to try to use various treatments (PT, acupuncture, massage, stress reduction, behavioral changes, braces, etc.) to help reduce the pain by strengthening your muscles, flexibility, mind, etc. or conversely, giving your muscles, mind, schedule, etc. a break. When those things fail, they can try more aggressive treatments like medications, injections & procedures.

So right now, I don't really have a definite diagnosis (there are plenty of diagnosis codes on my chart, but those are more for the insurance than anything else). My PM says that it could be the bulged discs, could be the fractured vertebrae that didn't heal properly, could be the desiccated disc, scar tissue around occipital nerve, arthritis in my spine, scoliosis, or any combination of those issues or none of the above. They all show up on scans.

But that's me. I spent a lot of money trying to find an answer & never got one, but my pain is well managed. Tramadol is pretty weak so maybe you need something stronger -- or something different like Mobic or some other anti-inflammatory. If you feel you need to keep doing tests to rule out possible causes, that's always an option. But if they can't figure it out & you just want relief, know that pain clinics can help you get some of your normal life back by reducing pain and helping you manage what can't safely be eliminated.

Hope that helps.

take care,
frances
Posted 9/28/2010 2:05 AM (GMT 0)
 

 

Thanks everyone for your kind, and helpful replys, and for the warm welcome.

 

Chartruex, thanks for the suggestions.   This doctor I have now has only been filling in because the one before him moved away. So soon I will be meeting yet another PCP. I was referred to see a rheumy when I asked, but can't get in till March of 2011. Crazy I know.

 

straydog, as I told chartruex I am going to see a rheumy, The appt is so far off I will be calling alot to see if they have any cancelations.  Thanks for your input. I will get copies of my tests, thats a good idea. I had a feeling this PCP did not even read the whole report from my MRI, cause he barely seen it for the first time when I was there. I didn't know what to think. He mumbled something about the colors red and yellow, when I asked what he meant, he said it looks good, you do not have arthritis in your hips.   about the bulged disks, so do you think they usually do not cause pain unless they are herniated or pinching a nerve? I'm only asking your opinion, do you think this is the case?   What you said about doctors not telling patients the results of an MRI sounds very likely to me.  I have read many stories on these forums about doctors not being up front, or saying there is nothing wrong with someone when there really was. I find that so sad.  I wonder if these doctors realize their attitude can cause even more pain and suffering. I do take Flexeril at night for the fibro, it helps some with sleep problems.    My PCP who dx me with the fibro, and osteo tried Savella on me, but it made me really naueaus. I choose not to try Lyrica, my hubby takes it, and it has such awful side affects, one being the weight gain. that would be depressing to deal w/weight gain on top of everything else.  I have also been on many different antidepressants. They all made me sick, plus I had  terrible bouts of Seratonin syndrome with 2 of them. the last one I the doctor gave me was Elavil, I asked him, can it cause SS, he sat there and looked it up right then, said no. So I checked myself before I filled the rx, it can cause it w/ the Tramadol!   All you told me was so helpful. Thanks, and i'll let you know what happens next.

 

Dani hi, it's good to meet you too.  Yes i had a bone density, it came back fine, maybe because I have been on calcium supplements since my early 30s. But you know, the hip pain does feel like a deep ache. I am almost certain it is Osteo. It's very gradually gotten worse over the years, and now it's like I said pain with every step. I think it's  Osteoarthritis in my joints.   

I can't take any kind of anti-inflammatories that have Ibuprofen in them, no insaids or aspirin of any kind. I took them so much (for back pain ) for many years, and now my kidneys can't handle them.  So I may want to try the Relafen if there's no ibuprofen or aspirin like products in it? the Arnica gel sounds like something worth trying to. i wonder if you can get it from puritans pride, I get some other supplements from them, they have good sales alot.  Thank you dani for the nice welcome, and the suggestions.

 

francis, thanks so much for your help too.  A pain specialist is something I am starting to consider, and I'm sure it would help to strengthen those back muscles. I just hate the idea of having to take narcotics, but I can see it happening sometime in the near future.   How wonderful for you that you found such a nice and understanding doctor. I can see how it would be life changing.   I honestly do not believe my doctor, and am glad he is being replaced, I go to a medical center where I can be on a sliding scale as I have no insurance. I quit my job about a year and a half ago because of the terrible pain, and fatigue, (just found out about the fibro in March of this year) also bad back pain. Actually my back hurts in the lumbar, middle, and upper, but I've only had an MRI of the lumbar section.   Gee it sounds like you are dealing with so much1 I hope you have found ways that really help you. Chronic pain can really wear you out, I know i do not have to tell any of you that. My heart does go out to all of you.

 

Thanks for listening everyone, I know its long, and sorry about that. It seems hard to put all of this in a few short sentences. I know some people are good at that, wish I were, lol.   I've read some on this site, and it looks like a very close, and caring group. Thanks again, hope you all have a good, low pain night.

 

Blessings, Debbie 
Posted 9/28/2010 1:48 PM (GMT 0)
Hi Debbie

I think you definitely need to get a second oppinion!  You know I have had hip pain very similar to what you describe that your having, and sleeping on my side just kills me and the hip pain so bad, I can only lay like that for a few minutes,! Anyway my spinal pain management Doctor ordered a MRI of my hip and after that a Arthrogram, and he then gave me an injection of steroid into the hip joint that dis absolutely nothing, so he then sent me to an orthopedic surgeon. The report from the MRI and Arthrogram said I had condral defects and a small  subchondral cyst with bone marrow edem, along with possible acetabular impingement of the cam type. Well when I went to see the surgeon he told me that my MRI and Arthrogram was completely normal and he had no idea what would be causing my hip pain!  To put it bluntly he was lying to me and was blowing me off!  I see my Pain Doctor  this Thursday, and I am sure he is not going to be happy about this.  I had a surgeon blow me off on my neck and he was determined that I should see another surgeon, and he referrred me to some one else.  It is frustrating, and I empathize with what you are going through, but please do not give up and just accept what that doctor told you! You know that Doctors are only human beings and they can be wrong and make mistakes, just like me or you and everyone else, and yes they can be lazy and incompetent  too! And as much as I hate to say this, but some of them may also be deceiving and dishonest. So keep pressing for answers, and try and get relief for your pain in your hip and back.!

I do wish you well and Good Luck to YOU!

White Beard

Posted 9/29/2010 1:28 AM (GMT 0)
 

 

Whitebeard, Hello and thanks for sharing what your going through.  Gee isn't it infuriating to know your doctor flat out lied to you? And who knows why? shakehead

 

 Sadly, some doctors just do not care enough to give their patients the care they deserve, and pay them alot of money for!

 

Sorry to hear you also suffer with hip pain, and that along with the host of all the other ailments you have! I hope you are able to find a way to ease the pain. 

 I get lousy sleep many nights because I have to keep turning to another position. The worse thing is not being able to walk 3-5 miles several times a week like I did for years. Although the fibro has had an effect on me being able to walk also, I still think it's arthritis causing my hip pain but time will tell, I just really doubt it is from fibro. Did you suspect the hip pain was possibly from fibro, or did you know for sure it wasn't?

 

I know there are some good doctors out there, but I am dismayed at how many awful stories I hear from alot of people how their doctors do not treat them well, and do not believe there is really something wrong.  Maybe part of it is all the drug seekers out there. And yes, they are fallible humans just like the rest of us.

 

Anyway I will try to get another opinion, it may take a little time is all with no insurance.  I'm paying alot of medical bills right now.

 

I'd like to know how it goes with you when you go see your pain doctor on Thursday, if you won't mind, please let us know. Maybe he will be able to help with the pain too.

 

Take care, and God bless

 

Debbie

 

Posted 9/29/2010 2:48 AM (GMT 0)
The wait for these specialist can seem like eternity..but you might want to try a neurologist
as a emg would show which nerves are being pinched by the disc bulge...and maybe the wait time would be
quicker for the neurologist...It took me 3 1/2 months to get into my rheumy, so yeah the good ones have a
long waiting time...but right now I'm just so sick and tired of all my Doctor's...so days are like that too...
Good Luck to you
(((((((((((((((((((((((((((((((((((((Debbie)))))))))))))))))))))))))))))))))))))))))))))
healing hugz
Posted 9/29/2010 2:10 PM (GMT 0)
 

 

   Isn't that the truth, though I know waiting for a specialist who can hopefully help us is worth it. I am calling the Rheumies office to see if theres been a cancelation, the odds are not good, and I know others are doing the same.   

 

 Just FYI my DH and I are planning to move to southern California in a couple months, it's where I lived for most of my life. (I so miss it there!) Because of that I know it's pointless to try to get in to see a specialist here in MD. I'm looking forward to the dryer climate there. I think it will be easier on DH and my arthrtis.

 

In this area, near San Diego,  I know there are more doctors, so I should be able to be seen there faster.

 

And oh Chartreux I read all the illnesses you are dealing with! It's understandable why you get tired of doctors.  How do you cope?  For me, I lean on my Savior, and take comfort that every day His grace is sufficient to see me through. Also what the bible says about eternity.. one day we will have brand new bodies!

Also the encouragment on these boards is a tremendous help.  Thank you, and

 

Hugs to you too Chartreux 

Posted 9/29/2010 7:42 PM (GMT 0)
hello HISFAITHFUL1, relafen "nabumetone" is a NSAID in the same group as aspirin and ibuprofen but it has a little less stomach irritant effect that you may be able to handle. Relafen is a good medication. i take it now and i took it for a long period a couple years ago without a problem and the other meds in this group like naproxen and ibuprofen do bother me also. mobic "meloxicam" and celebrex "celecoxib" are other possibilities for a anti-inflammatories. celebrex is known as a cox2 inhibitor meaning it does not inhibit cox1 which is involved in the lining of your stomach and i have seen mobic in that classification. i am not sure if mobic is a cox2-inhibitor but they give it to people with ulcer issues. you may want to consider Lyrica because it may not have bad side effects on you or as an alternative Neurontin "gabapentin"; these two meds are very beneficial for fibro pain and helps with spine pain. Tramadol is not a big enough gun to handle spinal pain much less your fibro and arthritis.the other negative of tramadol is it is open to interactions with many medications; for sure most anti-depressants and flexeril. soma, bacolfen, or zanaflex are some of the muscle relaxants that have helped me with spine pain and movement. lastly even a moderately powered pain killer like Lortab 10/500 or the Norco 10/325 would help you more than tramadol i think but a long-acting opiate such as Kadian [morphine] or metadone with a short-acting "breakthrough medication" would be a new world of pain control for you. good luck squezeing somethind out of yoour doctor so your pain control gets better. God bless.
Posted 9/29/2010 9:53 PM (GMT 0)
Hi Debbie,
I did want to share that I am on Lyrica (just 50mg at night) and haven't gained any weight on it -- though I wish I did b/c I need to gain weight. People with kidney issues can usually get by with very low doses. I think they might even make a 25mg dose, not sure, so might be worth a try. The low doses should keep you from getting the side effects.

On the plus side for slightly stronger narcs, I will say that right now I am on fentanyl and it has been wonderful b/c it isn't processed by the kidneys at all so we don't have to worry about what's building up or what organs are being harmed. Even people in full kidney failure can take it. I had some probs earlier when I was on Baclofen -- kidneys stopped working for a while -- and learned the hard way to stay away from antispasmodics. I am so sensitive to medications but fentanyl actually hasn't been too bad (I had more side effects from Tramadol) and it definitely helps with the pain. Along with other alternative treatments, the low dose I take allows me to work & keep my house somewhat clean and spend some time with family & friends. It's not my favorite option, but it is an option.

When I can afford it, my doctor gives me a script for a compound gel that they mix at the pharmacy with ketamine in it. I tried Voltaren but it made my hair fall out so we're back to the ketamine gel. My old PM even added a few other things to it -- gabapentin & clonidine & something else I can't remember. Either way it worked quite well. It ran me about $75 per tube. There are no nsaids or aspirin in it, but you do need to watch the dose. Normal dose I think is like 10% ketamine. Due to side effects, I went down to 8% and found that perfect. Some compound pharmacies will make a sample batch for your doctor & put it in a small plastic syringe. Make sure you wear gloves when you put it on or your fingers will go numb. ;) You could also try lidocaine patches, but I think they would be hard to apply to your hip so that's why I suggested the cream.

I sure hope you can find out what's causing the pain. Just throwing out ideas in the meantime so you don't have to suffer while waiting for all the appointments and tests and everything.

blessings,
frances
Posted 9/30/2010 5:10 AM (GMT 0)
 

 

  Thank you spinal soldier, and Francis 

  Everything you and the others have shared has been so encouraging, and helpful.

 

I have not tried asking this doctor for anything stronger most likely because my prior doc told me no, but did allow me to take up to 300 mgs of the Tramdol.  You are so right spinal soldier, it's not doing anything for the hip or back pain. I also have muscle contractions alot from the Tramadol and Flexeril, not mild twitches any more, but more like a hard jerk which happens in various muscles. I'm not liking this affect at all.

I guess my next step is to ask for a referral to a pain doctor. I just have a feeling whoever I see at this medical center will say no to anything narcotic. They have a sign in every examning room, saying they do not prescribe narcotics, as they believe in other methods of pain management, etc.

 

I will write down all these meds you both mentioned, and check them out online. And will grin and bare it, and go see the doc again!  Frances I may be willing to try a low dose of Lyrica, if it wouldn't make me gain, i'm at a good weight now, but even 5 more lbs makes a big difference. My DH gained 20 lbs on it, but he has to take at least 150 mgs a day. Thats one way for you to gain a little extra. lol. Serously not if it has bad side effects.

 

Also one more thing, Frances, please be careful about the Fentynol patch. My Dh took it for only 1 month, and started at 25 mgs going up to 75 only for a few days. It changed his personilty, my kind gentle hubby became argumentative, and a bit aggresive. Then when he stopped after I begged him too, he went thru the most awful withdrawl symptoms, it was like an addict trying to kick herion.

 

Not trying to worry you, but if you haven't checked out the side affects, and how hard it is to go off of, I suggest you do. Just google it, and rerad some of the stories from people who have tried it.  I think maybe it doesn't do this to everyone, but my hubby has a very strong tokerance for pain killers. He has DDD, and stenosis, and sciatica.

 

Gee, it's after 1 AM here!  thanks again for all the help and support. You all have given me some much needed courage.

 

God Bless to you both, and the rest who replied too.

 

Blessings,  Debbie

Posted 9/30/2010 6:08 AM (GMT 0)
On a side note try calling ahead to where your moving too, and getting on the waiting list before
the move...might be a solution...
Just trying to help...
((((((((((((((((((((((((((((((((((Debbie)))))))))))))))))))))))))))))))))))))))
Selling a house in this economy might be hard, good luck and well wishes on that...
Posted 9/30/2010 2:09 PM (GMT 0)
 

 

 

Now thats a really good, and practical idea!  I wonder why I didn't think of it?! It would help alot to be seen asap after were moved.

 

Thank you Chartreux. By the way, I really like your name. May I ask, (at the risk of sounding ignorant perhaps, oh well won't be the first time, or last) is it French?

 

In my stick of the woods, when I was born, Debbie was really popular. It's really Deborah, which I kinda like better,( but everyone has always called me Debbie) after  Deborah, the only woman judge in the old testament of the bible.  What's so funny is 3 of my 4 brothers married  women named Debbie! It could really be funny when we all got together!

 

Well here I go arambling off subject!  Thanks again, I hope you have a nice and low pain day Chartreux.

 

Blessings,  Debbie

 

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