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Posted 2/7/2013 6:04 AM (GMT 0)
Hello all,

I am rather newly diagnosed with Fibro. My health had been declining for several years now with unexplained health issues that could not be found on tests. I've had Osteo (OA) for 14 years and had been on Meloxicam for that. I also have unexplained torso/body cramps and was given Balcofen for those for about two years now. I recently was sent to a new doctor for pain management. This doctor is a D.O. and is the one that said he believes I have Fibro.

Well he gave me Desipramine for one month, and discontinued the Meloxicam and Balcofen. After I month I returned and it had not helped at all. He discontinued the Desipramine and prescribed Savella. I was on the metered pack then up to 50 mg twice a day. I have just returned and told him it was not controlling all the pain. So, he made a 'deal' with me that if I'd lose weight, he prescribe pain meds, if I don't lose weight he'll take them away. I'm not into his 'approach' but whatever. He prescribed Norco 5/325 taken 30 minutes before I exercise.

However, my problem is I hurt too much to exercise. I can only stand for about 10-15 mins before I have to sit down. When I walk the treadmill it doesn't last long and my OA is hurting in the back of my pelvis, at least I'm guessing that's it, along with muscle cramps (torso, hands, feet). These aren't he everyday cramps. Some are so strong I can see them moving and the next day it's like I pulled a muscle and the soreness last for three or four days. Since I'm still in such pain, I'm not really worried if he takes the pains meds back at all, as I don't feel they are helping me.

What I would like to ask from those more experienced than myself, when you have 'flares' or pain, does it move around during the day. For instance, right now, my hands hurt to move, joints, what feels like tendons being stretched, elbow on my desk, etc., and my shoulders. Does this pain move around in a day or could this just be plain old OA?

Is it normal to hurt all over? Is it Fibro to hurt only in some places on some days? Any input appreciated. I just can't decide if it could be OA or the Fibro causing such pain. Before it only seemed like my knee hurt. I find it hard to sleep and after giving the doctor the pain and activity journal he wanted for a month, he harped that my sleep schedule was insane. Duh, I can't sleep. I'm sitting here now because while I'm sleepy, I can't sleep, and then I'm feeling stressed/pushed because I should be in bed now according to the doctor. I use to take a nap in the day when I was worn out and now I feel guilty about doing so. Thanks again for any input. Dixie
Posted 2/7/2013 7:00 AM (GMT 0)
Have you had xrays and mris to confirm all of your oa? That would be a good place to start. Then you know without a doubt what areas are hurting from your arthritis. You also may want to see an orthopedic surgeon about your arthritis if the pain is so intense that you can't stand for very long.
There's a thread at the top of the forum called fibro 101. It has some wonderful information on fibro. Good luck.
Posted 2/7/2013 10:05 AM (GMT 0)
I was diagnosed with osteoarthritis years ago. I also have spinal injuries.

I think we need to work with our doctors and do our best on our end to help ourselves. It can't be good for a person to keep changing meds.

I can only walk for 15 minutes before I get sore and weak and I'm a little overweight. A lot of us have to often change what we're doing from sitting to walking. If I sit too long (longer than 30 minutes) I'll get very sore and it can cause a flare up. I went to a movie at a movie theater a couple weeks ago and I suffered for it afterwards and the next day. A tip for your short walks: listening to music can help some.

Concerning the pain, I've found eliminating inflammatory foods has helped some with my pain and it can also help you lose weight.

Good luck to you.
Posted 2/7/2013 2:36 PM (GMT 0)
Fibro can cause sleep disturbances. This is what tipped me to a huge problem, lo, so many years ago.

So, sleeping is bad? Hard to do? Can't get enough and always tired? Presumably more achey? Why can't you get to sleep? What happens?

Hmmm?

Sorry you feel awful. I wouldn't be happy with this doc either.
Posted 2/7/2013 3:29 PM (GMT 0)
I'd like to add that yes my pain moves around during the day.

When it comes to sleep I use sleep supplements, otherwise I wouldn't sleep. I take melatonin and l-theanine. One doesn't work for me without the other. What's nice about these which you can't do with sleeping pills which did not work well for me, I can take more during the night.
Posted 2/7/2013 3:57 PM (GMT 0)
Hi and thank you for the responses.

@ Angelic_Victory

OA was diagnosed in 1999 when I had right knee surgery. It was at that time the doctor I had told me in around 10 years I’d be in a wheel chair. I beat that so far. In 1989 I was in a car wreck where I was ejected threw the front windshield ending up on the hood. The impact was at 68 mph into a tree. God was with me then, I was knocked out, beat up, bruise, some lacerations, but mostly in good shape. Recently I’ve had MRI’s and from those the doctor (I have 4 doctors) told me that he saw arthritis in my neck, and left knee to come back if my knee started to lock on me. He had already given me a shot in my right shoulder for Bursitis but it wasn’t effective. In addition, I still hurt but the Meloxicam did help, so I was confused as to why the Pain Management/Physical Rehab doctor removed it after he said he diagnosed Fibro, unless that is just something that is done.

@ Almost Medfree

I do not mind working with my doctor at all. In fact, I told him I’d work with him in any way possible, however, my pain is what over takes me. I can only do what I can do. I’ve only had my feet back for a couple of weeks. Previously, my feet were so swollen that I could not wear any shoes and that condition went on for a few years. I wear a size 8 1/2; last pair I bought was 10's. I just had surgery in Dec and Jan to fix some veins that were causing that issue. The other doctors had no clue what was wrong and kept giving me Lasix, I finally was referred to a specialist for PAD, and that’s when he told me what was wrong with my feet. I’m two weeks post op, and after he stripped out those veins, there was nothing but relief! I was so happy to wear shoes again.

I am overweight, no doubt, have been after having my children. Last month I dropped 11 lbs. without doing anything, which I was surprised about. When I mentioned this to the doctor he said, that’s great, and if you tried you’d lost 22. He prescribed the pain medicine so I could walk the treadmill. That’s what he wanted me to do. He said I should be exercising 60 minutes a day, although in my mind, that is an unrealistic period right now when in pain and the pain meds only take the edge off. I’m sure maybe in the future I can work up to that, I don’t know really.

(Note:) Was posting as the same time as you. I will try those otc products to see if I can sleep better. Not sure if I can take sleeping pills or not, never tried them. Thanks.

@ Myself 09

about my sleep habits, for years I have only been able to sleep about four hours, get up for a few hours, then I’m able to go back to sleep. I get my 8 hours it is just broken sleep. Some days I was taking a nap because I cannot make the day if I don’t. I mean I will be so tired come 6 or 8 that I cannot do anything else that day. Therefore, I stopped all naps, and made myself try to sleep at 10 pm.

I cannot get to sleep, and I lay there until three or 4 am before I fall asleep. That in itself frustrates me to no end because I feel like I could be doing something like working if I’m going to be awake. I work from home. Although I will say, it does not matter how much sleep I get, as I’m always tired. I can sleep 10 to 12 hours and still be tired.

That’s why I was asking if the Fibro pain moved much in a day, or does it just set in and not move. I have been having killer headaches lately, I do not drink, but I took a shot of liquor to try to ease it. The doctor laughed at that one but I just didn't know what else to do. When I wake up, I am stiff, have to stretch in bed to get going, some days I'm stiff for over an 1 1/2 and during the day my neck, shoulders, elbow, mid back, pelvis, hands, knees, and heals ache/hurt. I also have zero energy or stamina. Zero.

What is odd is that the pain in my hands only started that I can remember a few months ago. Right now, both hands hurt and have been for about four days now, but usually it comes on with some areas hurting in each hand, and then gradually builds to all fingers/joints and what feels like tendons. That is why ask about the possibility of it being OA and not the Fibro that is giving the worst pain with the Fibro just giving the overall pain/flu symptoms.

I’ve been tested for RA and told it was negative but that my alkaline phosphate and sedimentation rate was high. My primary doctor said the alkaline phosphate was probably my bones/OA and that the sed rate showed my body had a lot of inflammation. The Pain Management/rehab doctor only said the sed rate was high at 44 but that I did not have RA. I guess after being sick for so long without any one doctor being able to tell me what the problem was, I was hoping for things to get better faster. It's the pain that gets to me the most along with soreness, stiffness, overall aches, which I know most of you have as well. It's just upsetting and disappointing. I just have mixed feelings about it all.

Thank you again for you input. It is greatly appreciated. Dixie
Posted 2/7/2013 4:19 PM (GMT 0)
Sounds as if you haven't been getting enough deep sleep. Broken, unrestorative sleep is a component of fibro, where your body moves or cannot drop into a deep sleep, or pain and muscle movement wakes you up. This, of course, causes stiffness, achiness, and lack of energy.

Try an otc sleep aid and see what happens. Check for interactions first. Sometimes, otc can work for some and not for others.

I have taken prescription sleep meds for years. Without proper sleep, I would not be able to work. It is truly amazing how much depends on this.
Posted 2/7/2013 4:23 PM (GMT 0)
I will try that. Thank you again, Dixie

P.S. Love your sig about the glass. :D
Posted 2/7/2013 4:29 PM (GMT 0)
Hi, DixieDarlin, and welcome!  Yep!  Fibro pain moves around and some days are better than other dayswhen it comes to pain because it waxes and wanes.  As others have suggested, do read Fibro 101...the first thread on the forum.  Good starting links for you are called Symptoms and A Thorough Explanation of Fibromyalgia.  All the links are good and you will learn a lot there.  I've had fibro for nearly 26 years and am still learning new things!

 

I honestly cannot believe some of the doctors out there.  Obviously your doctor has never suffered from chronic pain before.  You have no idea how much I wish doctors spent one week in our shoes.  That's the only way they could really understand what we are going through.  I can't believe your doctor is holding out pain medication like a carrot to make a rabbit run!  I'm speechless.  I have lost 85 pounds since having fibro and I still have chronic pain.  It does help some but it certainly doesn't make it so you don't need help with medication.  GRRRRR

 

I developed excessive pain last year and found out I had an arthritic problem with my back.  I was put on Vicodin and it didn't help at all.  I was then put on Tramado and that didn't help either.  I find more alternative things and changing my lifestyle some has helped me the most...along with keeping a positive outlook on life.  There is a wonderful link in Fibro 101 about maintaining a positive attitude and that really helps a lot.

 

I honestly don't think your doctor understands fibro.  I can't believe he said  your sleep schedule is "insane"!  That's one of the hallmarks of fibro...sleep difficulties.  Many here have had sleep studies, have sleep apnea and need CPAP machines.  I don't.  I put myself on a sleep schedule.  I go to bed and get up about the same time every day.  No sleeping in on the weekends.  turn    I give myself 8-9 hours in bed.  I used to wake up every couple of hours during the night because of pain but now, since I started a muscle relaxer, I only wake up once a night.  That really is a blessing.  I also do something that you are told not to do.....go to sleep with the TV on.  It puts me to sleep within 15 minutes so why stop?  I turn it off when I get up in the middle of the night to use the bathroom.  If you are married, put the closed caption on and turn down the volume.  It shouldn't bother him.  By the way, I don't nap.  If I did, I would be up all night.  I will have what they call a cat nap or a power nap sometimes when I just can't keep my eyes open.  They last 10-20 minutes and I'm usually sitting up!  smilewinkgrin

 

I do know that if I were you I would be seriously looking for another doctor.  Many here use a board certified rheumatologist.  You still have to make sure they treat fibro patients because there still are doctors out there that think this is all in our heads.  But the rheumatologist can help with fibro AND your arthritis.  One doc for two illnesses!  I have a rheumy and a board certified Internist that help me.

 

I don't use the medications they usually prescribe for fibro.  I use malic acid/magnesium supplements, vitamin D3 supplements, ibuprofen with food, and Tylenol.  There are links about the supplements and how they work in the body in Fibro 101.  The only prescription I use that helps with fibro and rheumatoid arthritis pain is a muscle relaxer called Robaxin.  This has helped me significantly. 

 

I do keep moving.  Sitting or laying too much will make you stiff as a board and have more pain.  I do gentle exercises every day.  I do walk every day as a gentle exercise and I swim in the warmer weather.  Both of these are very good.  I also pace myself when doing things.  Everything does get done but in a different time frame.  I do a lot of planning ahead and setting reachable goals for each day.  I don't try to clean my entire home and go shopping.  shocked    I think you know what I mean.

 

I'm looking forward to getting to know you better.  Don't hesitate to ask questions because we are here to help you.  Hope to hear more from you soon.

 

Sherrine

 

Posted 2/8/2013 8:27 PM (GMT 0)
Hi Sherrine,

Thanks, perhaps I should look for a Rheumy/Internist doctor. As I said, I was sent to this doctor for pain management, he is a Physiatrists, so maybe he is a Rheumy? I have no ideal, I just know I went to him for pain management and he diagnosed Fibro after a few visits (3-4). So, when I call to inquire, do I need to specifically ask if the doctor treats Fibro?

My medicines are as follows:

Newest meds:

Norco twice a day to reduce pain for exercise done twice a day
Savella 50 mg twice a day 7 am and 3 pm (his time)

Regular meds:

Ventolin rescue inhaler 2 puffs twice a day
Albuterol Sulfate solution .083% use while at home instead of the rescue inhaler.
Symbicort 4.5MCG: Twice a day
Furosemide 40 mg once a day
Metformin ER 500 mg: Twice a day
Montelukast 10 MG Tablets: one a day
Glipizide 5 MG Tablets one a day
Lansoprazole 30 mg one a day
Simvastatin 20mg once a day
Levothyroxine .137 mg one a day
Potassium & Magnesium Aspartate 250
Epi-pen (emergency)

Meds just discontinued:

Potassium Chlor 10% Liq (20MEQ/15ML) (for cramps)
Meloxicam 15mg one a day (OA)
Baclofen 10 mg twice daily (cramps)


Allergies: Penicillin, Percodan (vomiting), Remeron, Sinequan, Seroquel, Synthroid (ingredient), Risperdal, Klonopin (tongue swells), Zoloft, Abilify.

I'm on quite a bit of medicine so yeah, anything I can stop is great. I just feel like crap all day long every day and it's really bothering me. The last visit with the doctor he stated he was going to give me a stimulant to get me 'threw' the exercise, then he said, "I'm not sure which way I want to approach this." At the end of my appointment, I ended up with the pain medicine Norco. /shrug Thanks, Dixie
Posted 2/8/2013 9:01 PM (GMT 0)
You can call and ask if the doctor treats fibro patients. You can check the Yellow Pages because many times doctors tell what they treat and if they are board certified. You could see if there is a fibro support group in your area. They would know good doctors. Your local hospital might know of a group. Or, you kind pick a name and search them on the Internet and see reviews, too.

Sherrine
Posted 2/8/2013 9:04 PM (GMT 0)
Or if you have insurance you can call your provider and ask for recommendations. I found my gastro doctor that way and he's been mostly a big help. Lol
Posted 2/8/2013 9:19 PM (GMT 0)
Thank you both. Have a great weekend. :)
Posted 2/9/2013 2:00 PM (GMT 0)
I also see a rheumatologist; he was the only one who could help me with the extreme fatigue & pain. Actually, he was the only Dr. who BELIEVED in my problems!

But, I would say your Dr. has given you some sage advice @ moving & exercise. Pain gets worse without movement. I like yoga - slow stretching, etc. Also enough sleep is so important. My fibro kicks in BIG TIME if I am not sleeping.

So, I do very well - considering where I started - with Cymbalta for the fibro, Tramodol & Mobic for pain, and Ambien to aid sleeping.

Best wishes.
Posted 2/9/2013 2:27 PM (GMT 0)
Thanks for the input. That's where I sit there's so much pain (all over), and I'm so tired. I can be working and just get so tired I have to stop right then and go lay down. It just overcomes me like I have no control. I do stretch especially in the morning before getting out of bed. It's a must. I have been walking the treadmill, not as much as he wanted, but after yesterday, I'm hurting more today. Guess I can't see why I'd do something that significantly causes my symptoms to become worst. Maybe that's the key? No pain no gain?

I've been trying to sleep regularly when possible. I know Tramodol cause I've taken it, but I have Mobic in generic as Meloxicam.....I never knew it was for pain. Thanks for telling me. Dixie
Posted 2/10/2013 8:33 PM (GMT 0)
Deepwell,

THANK YOU so much for this information. I will read all of it and tomorrow start trying to find another doctor. I had sent a fax along with my full history to the doctor I see now (couldn't remember if I had given him one), in that fax I told him I was unclear on what he told me at the appt due to a major headache that day.

I asked him what medicine I was taking to help with the OA (prior diag), and for the severe cramps since he discontinued those medicines. The Potassium & Magnesium Aspartate 250 just does not stop those cramps. When I get those cramps you can see the muscle moving and they'll sometimes hurt days afterward like I pulled them. There's times I can't even fight them back...like standing up and pulling the other way. Not very pleasant. (If I've stated this before, please forgive, I can't remember crap anymore) :P

At any rate, the nurse called and told me he said if I didn't like the way he was handling my condition, I could find another doctor. I told her thanks but that I thought perhaps he misunderstood that I was asking not pointing fingers. So we hung up and she called back and said I could take the Meloxicam...but still nothing for cramps.

Thank you ALL very much for the information. It has been very very helpful. Bless you all. Dixie
Posted 2/11/2013 2:10 AM (GMT 0)
Thank you Deepwell, yes, the article was over my head so I didn't read all of it. But that's fine, I appreciate you trying to give me insight. :) Before this new doctor with the Fibro diagnosis I took Balcofen for the cramps, minded I still had them just nothing like major. But the new doctor took me off of it. I took Klonopin/Clonazepam before but had a reaction/allergy to something in it. Thank you again for your help. Hope you feel better soon. Dixie
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