Wanting a little advice and maybe a little venting

I was diagnosed about a year ago with fibromyalgia. What started just as a sore back turned into all over body pain in a matter of months. My back pain never goes away but the rest of the pain seems to migrate. Up until about 4 months ago the pain seemed to mostly be in my muscles but then my joints started to hurt too. about a year or so ago I had some tests done which showed elevated ANA so my doctor sent me to a rheumatologist. Further testing didn't show any inflammation, thyroid problems or Lupus. When the joint pain started my rheumatologist repeated a few tests but since they didn't show inflammation he didn't re do the Lupus test. He put me on Plaquenil. He said it could take a few months to work but after about 3 weeks I didn't have the pain in my joints anymore. I still continued with the muscle pain. about two months ago the joint pain returned and was quite severe so he put me on Prednisone for a week which helped. Then it happened again right after Christmas so I went on Prednisone for another 5 days. I questioned whether or not I should stay on the Plaquenil because I don't have Lupus but also now I have had two flare ups with joint pain but he said to stay on it for now.

I've tried several medications and none have worked and most have had side effects (Tramadol, Cymbalta, Gabapentin, Doxepin and different anti-inflammatories). My pain specialist gives me low dose Norco since it is the only thing that helps the pain. He also had me try Savella over the past few weeks but I've had bad side effects with that too even though I've titrated up even slower than the box recommended. I've had severe nausea, racing heart and it makes my insomnia even worse. I got up to the full dose for a few days but just couldn't handle the side effects so now I'm taking a lower dose. It's been about 3 weeks and it hasn't helped yet so I'm wondering if it is even worth continuing to try.

I also take Vitamin D, Malic acid and magnesium but nothing seems to help. I feel so bad for my family since they know I'm constantly in pain. I try not to complain but by 3:00 pm I'm worthless and need to take my pain pill. I wake up very stiff but stretching seems to help for awhile. I try to do at least some walking on the treadmill since it is too cold to go outside. It seems that no matter what by 3:00 I'm miserable. I hate taking the Vicodin every day and my family isn't too happy about it. They are worried that I will become addicted to it (although I've been on it for a year and have never taken more than 3 pills in a day). I also had a cousin who almost died from liver failure due to long term use of Tylenol so that scares me. I am on the lowest dose of Norco, which only has 325 mg. of Tylenol in it so I'm only getting 650-975 mg. a day but I worry since I take it every day. I need to take something to sleep but try to alternate between Valium, Flexeril and Benadryl. They usually help me fall asleep at first but I usually wake up around 3:00 in a lot of pain. My husband sleeps on the couch since I toss and turn so much at night.

My husband tries to be understanding but I think he is tired of it. I also think he feels that it is just stress related and that I can somehow control it. I can tell that my extended family doesn't want to hear anymore about it either. I don't talk about it unless they bring it up. For instance at family gatherings they offer me a drink but I tell them I can't because of my meds and they'll say something like "you are still taking pain pills?" or they will ask me how I'm feeling. I don't really say much because I don't want to complain but I can tell they are tired of hearing about it.

I would appreciate any suggestions. I've read Fibro 101 and it has a lot of helpful suggestions. Are there any other medications I should try? Do you think it is ok that I'm on the Norco every day? Any advice regarding the family?

Hi, Hpymom, and welcome!  I'm so glad you found us and joined our family.  I use malic acid/magnesium supplements and also vitamin D3 supplements (5,500 iu) and also a natural product called Curamin that helps me some also.  I do take 2.5 mg of Vicodin to take the edge off the pain when I'm having a bad day.  That's half a pill of the lowest amount sold.  Remember, there is Tylenol in that, too.  I do take extra strength Tylenol but also have liver panels done to make sure it isn't affecting me negatively.  I used to use ibuprofen for decades but developed bleeding ulcers this past summer so no anti inflammatories for me now.  That's when the Vicodin was added to the mix.

 

I do gentle stretching exercises, a daily gentle exercise (I walk daily but swimming and  yoga are some other good exercises for fibro) and I pace myself when doing things.  All of this combined does help me control the pain.

 

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

Well as far as family goes, I don't bring it up unless they ask about how I am doing. My husband is very supportive and I rarely complain about my pain. He knows by looking at me what kind of day it is. I have a few people say, oh I know how you feel I did such and such yesterday and I am so sore today. Well that gets under my skin because no you don't know, you have no idea of what it feels like to have pain everyday, all over, and no breaks. I mean my family is pretty much very supportive, and my mother worries to much lol. This is probably one of the most hardest things you can have because it's no outward symptoms and it doesn't show up on tests.
I have just got to the point to say that it's ok if you don't understand or don't believe me, because I might be the same way if I didn't have this. It's very real to me and I don't need to talk you into to believing me, I am in this body not you. Not in a mean way lol, but just a matter of fact.
and seriously it's ok, some people will never accept it.

All I can offer is a (((((HUGE HUG))))). I've not been diagnosed with anything yet, still waiting for my appt with a rheumatologist. I, too, suffer from back pain that never goes away and now, months later my hips and knees and various other parts are hurting or aching or burning at random. I sincerely hope that you have a better time of it very soon. Don't feel bad about taking pain meds!!! Would you feel bad for taking your blood pressure meds or your diabetes meds??? If you need it, TAKE IT!!! Nobody else has to live in these bodies of ours. Talking about the pains makes me feel like I'm sharing a part of something that's a huge part of my life and holds great importance to me and my well being. My family does get tired of hearing it but I get tired of hearing about their football teams and such too so it's a give and take. And also why I found this site...to talk to people who care and understand. I just started on here today and I swear I feel like 50lbs has been lifted from my shoulders already from these wonderful people posting to me.

BEST WISHES! WELCOME! KEEP IN TOUCH!

My husband is not very compassionate about people being sick but he is getting better. We own a restaurant and I do the evening shift because he knows how difficult mornings are for me. Today on top of the fibro pain with the snow coming, I have a terrible cold so I only went in for awhile but I didn't cook, don't want to spread germs. He says he prays for me to get better but he still doesn't completely understand. He thinks mind over matter and even though I have faith and also pray for healing, I know I can't will myself better. I do know with him pushing me I do more than I would if he wasn't in my life. As far as tips for pain. I can only tell you what helps me = massages, stretching, heated bed buddies and eating healthy limiting sugar intake. For supplements I have been taking fish oil twice a day and you know I hardly have needed my arthritis medicine so I am less stiff. I also take magnesium daily which helps with muscle spasms.