Fibromyalgia pain-bad days???

cutebagaddict08 · Mar 17, 2011, 11:34 AM

Does anyone have advice on how to deal with the pain/aches on 'bad days'-the days you just want to lay in bed? I was just diagnosed with Fibromyalgia 3 wks ago, started on a small does of neurotin....some days are defiently better then others. Sometimes the pain will come on really quickly and I feel like my back is so sore and stiff, like I can't stand up straight. I'm 27 yrs old. (I also have PMDD.) I have a physically demanding job but so far I try to make my schedule flexible so I have a day or two off in between work days. But it still takes a toll on me, at work I've just been telling co-workers my "back hurts."
Any advice would be great?

anna342 · Mar 17, 2011, 04:46 PM

I guess giving yourself a breaking physically and mentally is important. Time out without pressure to 'just sort it out' kinda thing. For me the important things in keeping well are keeping check on my diet and making sure I don't overdo the sugar and caffiene which cause highs and lows in energy and seem to affect my body. Also taking showers/baths help get me going. Doing some light stretches in the mornings and evenings can also be really beneficial for the tight achy feeling I get. Other ideas are heat packs, gel anti inflammatories (ones that go on the skin rather than swallowed, because those tend to irritate my stomach), meditation/relaxation cd's. Talking about emotional issues can also help, since there is such links between emotional health and pain levels for a lot of people. Pre planning journeys, work schedules, incorperating rest time etc is also important to me.

Hope some of htat helps, I'm sure there are so many other things too.

sabby · Mar 17, 2011, 04:52 PM

May I ask what dose of neurontin you are on and when you take it? When I was on it a number of years ago (it was a godsend to me then), I took some morning and night and I graduated up in dosage starting with 300mg's up to 1100 mg's. I believe (I could be wrong) that you can go up to 1800mg's. Some folks find it to be sedating, but I did not so I was able to take it in the morning okay. Point being, maybe you need to up your dosage? Of course you would have to talk with your prescribing physician. Titrating up or down needs to be done gradually.

I know that many times my pain level increases with bad weather. Have you noticed that for yourself at all? I keep an eye on the weather and when a cold front is coming through, I will be sure to use my prn's so I can try to stave off a really bad flare. Sometimes it helps, sometimes it doesn't. It's all a crap shoot

Other than that, I have to just work through it and complain LOL. My job is sometimes physical as well as the individual that I take care of is a fall risk and either I'm helping him stay upright or picking him up off the floor. Walking with him can be difficult at times and he does use a gait belt which helps but it's hard on my back as well. I can't quit the job so I mush on threw it.

I hope you are feeling better soon!

cutebagaddict08 · Mar 19, 2011, 03:11 PM

I am on 100mg of Neurontin TID (three times daily.) I usally take it in the morning and one around dinner and then during the night. (I work nights.) If I am off-I take one in the AM, one evening, and one late during the night. I do Yoga when I wake up. The yoga seems to help. and I've noticed if I go more then 8hrs not taking a neurontin-my pain comes back. The doc started me at a low dose, and said next time I see him (in 3 wks) we will increase it gradually-I'm really sensative to medications.

sabby · Mar 20, 2011, 07:39 AM

Well it sounds like you are doing all you can to mitigate the pain at this time. I think that once you start to titrate up the dose of neurontin, you will get some better pain relief. Most of the time it's a matter of knowing what our limits are and giving ourselves the opportunity to rest when we must rest.

Yesterday, I was asked to help move a piece of furniture out of the cellar and up to the truck. We had to go out through the bulkhead which has horrible steep stairs. I wasn't sure I could do it, but gave it a try. I succeeded but of course I paid for it and am still paying for it. Silly me

A lot of times its a matter of finding out what works best for us and learning our boundaries. As time goes on, you will find a groove for yourself I'm sure!

cutebagaddict08 · Mar 20, 2011, 12:19 PM

I defiently noticed I need to balance things alot more-and learn how to do that.

missbelle · Mar 20, 2011, 12:34 PM

Quote:

Originally Posted by cutebagaddict08

I defiently noticed I need to balance things alot more-and learn how to do that.

that I think is the key......and being able to look at things at home and not want to jump up and fix or clean them....letting some things go and allowing pain days realizing that it is normal to have pain some days based on your dx....I practice acceptance, but darn its very hard at times because I just want to be a normal person that walks normally and does what they want. I have generalized osteoarthrits and its all based on priorities and balancing my life. It is tough!!

sabby · 04:40 PM

I still have trouble feeling like I am lazy when there are days all I can do is nothing. It makes me so mad sometimes. I try to be easy on myself but it's not easy for me to do that. Being a caretaker for someone with mental and physical disabilities, I have to be able to care for them and sometimes it's all I can do.

Perna · Mar 22, 2011, 12:15 PM

I think it takes some trial and error figuring out what may cause flares for you and what works best so you feel better. I know I'm big on denial at first and test limits and don't take meds when I feel better, etc.

cutebagaddict08 · Mar 26, 2011, 11:30 AM

Yes, it's so hard to figure out how to balance your scheduel. I haven't even told alot of people yet.....I mean I look pretty healthy on the outside, but inside I dont' feel healthy (especially on 'pain' days.)....and some people don't understand that.

ina91 · Apr 01, 2011, 05:19 PM

This one cosmetics store called Lush has these wonderful fizzy bath balls and recommends certain varieties for various ailments. I've definitely experienced some relief after a good soak with them, maybe give that a shot? I also drink a lot of coffee on bad days because I find having that extra energy boost helps me deal better.

cutebagaddict08 · Apr 06, 2011, 09:19 AM

Quote:

Originally Posted by ina91

This one cosmetics store called Lush has these wonderful fizzy bath balls and recommends certain varieties for various ailments. I've definitely experienced some relief after a good soak with them, maybe give that a shot? I also drink a lot of coffee on bad days because I find having that extra energy boost helps me deal better.

I have heard of Lush....my friend actually gave a bath set from their once. I know they have a store in the city here.

SlatkaMala · Apr 15, 2011, 05:03 PM

I have fibro as well, so I know how crappy it is when you have a flare up day. Sometimes I stink myself up with the muscle cream for my neck and shoulders. Super hot baths help out as well.

But if you have a bad fibro day, go ahead and take a rest day because if you try to punch through that and do heavy duty work or things that require lots of concentration, you'll feel like absolute horse bollocks afterwards.

ravensong333 · May 12, 2011, 12:27 AM

Yesterday I finally got the cortizone shots in my knees . The only trouble when all the numbness wore off so my left knee hurts the most and several times just last night and today that my right knee would just fold up on me I've managed not to fall . But the pain in my right knee has been in severe 10+++ pain that the fibro kicked in too .

Twilightsky · Feb 22, 2012, 09:07 PM

Ravensong (((hugs))) I am new here but surely I can honestly say I know what you are going through. I have been in an episode of chronic pain for the last three weeks. I just can't shake it. I didn't stop by for you to feel bad for me though, I just wanted to stop and support you. I AM SORRY that you are going through this. If you need someone to talk to hit me up in my message box if you like.

Twilightsky · Feb 22, 2012, 09:13 PM

You should ask your doctor about lidoderm patches. That is what I take. It takes awhile to kick in but it gives some relief without the smell. Hope you are doing well today.