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Old 11-08-2009, 07:56 AM   #1
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Join Date: Nov 2009
Location: chicago
Posts: 39
untouchableme HB User
Things that seem to help

Hi everyone,

I haven't been officially diagnosed w/ The Beast yet, I was given a tentative diagnosis by an anesthesiologist and referred to a DO at a local rehabilitation hospital that specializes in the treatment of FM and chronic pain. (My appt. is 12/7) I don't know if I have FM, but as my symptoms are right on target, I thought I would share what I've been using that seems to help a little. I would love if any of you would do the same. Thanks!

Rx meds:
Voltaren Gel: A topical preparation containing an NSAID. Helps me w/ the "burning skin" feeling, but I have to use it pretty frequently. Doesn't really touch the muscle pain much. (given to me by a friend, she used to get it OTC in Germany. Dr. is okay w. that)
Lidoderm Patch: Also helps w/ burning and takes a little edge off my muscle and joint pain. I have to use surgical tape to keep them in place and that irritates my skin but it's worth the trade-off for me.
Trazodone 50mg: Helps w/ my insomnia most nights and seems to keep my vivid dreams at bay. My bf says I still tend to stop breathing in my sleep however and pain can still wake me up.
Migranal Spray 4mg: Usually relieves my migraines either partially or completely. I like it because it doesn't seem to have side effects for me, but like any other mig. med you have to take it right away and it doesn't always work.
Maxalt 10mg: I switch this off w. the Migranal to try and prevent tolerance. It usually clears my headache but it does make me sleepy.
Hydrocodone-APAP 10mg (generic vicodin): Takes the edge off my pain, both muscle and burning but obviously has the side effects of drowsiness, nausea, and constipation (sorry if that's TMI). I do get concerned about tolerance with this as I would prefer not to end up taking 30 pills a day and in drug rehab. because of it. Currently I average about 3 - 3 1/2 pills a day when I'm really bad (which lately is all the time). That said, I wouldn't want to go off it without a good alternative. Dr is recommending Tramadol which I may switch to after my eval.
Effexor 150mg: Prescribed for my depression which I was diagnosed with years ago. Has some unpleasant side effects when you first start taking it, you have to ramp up and wean off otherwise it really messes with you. It does do the trick for me, much better than some other AD's I've been on. The funny thing is that since all of this body pain has really kicked in, I haven't had much trouble w/ my depression (?). So my mind and soul are doing okay but my body is KILLING me lol.
Alprazolam .5mg (generic xanax): Prescribed for me for anxiety, I take as needed, so not every day. My psych. originally had me on 1mg of Clonazapam, but it made me feel like a zombie so I asked for something else. Sometimes 1/2 will do the trick. Can help a little w/ pain. The biggest benefit I get from this is that it relaxes me enough so I can meditate.
Non-Rx meds: I don't get any benefit from OTC pain relievers so I don't take them anymore. I figure my liver and kidneys are some of the few areas in my body that are doing okay and I'd like to keep them that way. If I get a cold I generally don't take OTC cold or sinus medicines as they don't work well for me and I HATE how they make me feel. I do rinse my sinuses morning and night. I use a squeeze bottle as opposed to a netti pot - too much of a klutz for that. If I'm really congested and it's not moving I do break down and use Mucinex. side note - I've researched the Guai protocol and decided it's not for me. It's taken me years to find a skin care regime that works and I don't want to start over as it seems the benefit from GP is not much greater than other FM treatments I've researched. I know I'm not disciplined enough so I would just be setting myself up for failure and I don't need another hammer to my self-esteem.
Vitamins: I really suck at taking these, partly because eating, esp. in the AM is hard for me. Currently I only take a Multi-V, Fish Oil and a B-12 supplement. I plan to ask about vites. when I get my eval.
Foods: I try to stay away from artificial sweeteners as I've heard a lot of bad things about them (I do love my Fresca though ). I have trouble eating, food just doesn't appeal to me any more so I really listen to my body and eat what it tells me to. I drink a lot of Kiefir, "Green" drinks, i.e. Superfood, and healthy smoothies, not the ones w/ the HFCS and tons of sugar. Lean protein, vegetables (V-8 is great for when eating is too hard), eggs, cheese, ice cream (I seem to crave dairy but can't stand milk), rice both white and brown, soups and of course potato chips d I've cut down on my caffeine, usually just 1 - 2 cups of coffee in the AM or if I'm too nauseous for that I'll drink a coke or pepsi. I'm nauseated a lot so ginger-ale is a lifesaver for me.
Other: I wear a lumbar brace nearly all the time as instructed by my Doc. It's big, bulky, hot, plastic w. an air bulb dangling down, and I hate it as it's nearly impossible to cover (my HR Director says I need to so as not to freak out my co-workers),....but I have to admit it helps w/ my lower back pain. I have two herniated discs in my lower back and two in my neck. The lower back ones are causing severe stenosis down my left side and my left SI joint hurts terribly. It doesn't seem to help my hip, butt or leg pain though and I still have noodle leg(s) most of the time. Added bonus - my 11 yo daughter and her friends get a kick out of "pumping me up".
Exercise: Right now I'm not able to do much but can't wait for my eval. so they can get me on a program. I do know that when I'm able to, walking or in my case, lurching around outside in the fresh air feels great and I'm really bummed that it's going to be too cold soon (cold air feels like a match struck against my skin).
PT: I'm not currently in a PT program, pretty sure that will change with the eval. Previously I was getting electrical muscle stim. and ultrasound from my neuro's office but stopped because not only was it not helping, it wasn't being administered correctly and ended up making things worse.
Injections: Tried Lidocain injections in my neck once over the summer. Took 15 shots and it did absolutely nothing but I knew going into it that it doesn't help everyone. I think it made my neck hurt more for a while.

I have a lot of trouble regulating my body temp and would LOVE any tips to combat hot flashes and cold sweats. I'm not yet in menopause so HRT is out and wouldn't be an option for me anyway due to family history of heart disease and breast cancer. Also any tips on relieving the nausea which I can't stand!!!

On a final note, I love ironic humor so I thought I'd share this w/ you. Reading the boards and other sites, a lot of FM patients describe how they feel as being "hit by a truck". In 2006, I actually was hit by a truck!! Stopped in rush-hour traffic on the highway, been sitting about a min. Next thing I know my face feels like it's on fire, there's some kind of smoke/dust swirling around me and I can't breathe, my body feels like it's been body-slammed by Mark Henry (my daughter LOVES WWE), and some guy is screaming at me through the window - "What happened!!" "WHERE DID ALL THE BLOOD COME FROM"!!! (I love that since it was the driver of the truck). I manage to turn my head and the front end of a tractor trailer is in my backseat I just have to laugh If nothing else, it makes for a pretty good story. Peace to all and thanks.

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Old 11-08-2009, 09:14 AM   #2
Senior Veteran
Join Date: Jul 2009
Location: Worcs UK
Posts: 809
thesweetlife HB Userthesweetlife HB Userthesweetlife HB Userthesweetlife HB Userthesweetlife HB Userthesweetlife HB Userthesweetlife HB Userthesweetlife HB User
Re: Things that seem to help

HI there - I was horrified to hear what your HR Director, if it becomes an issue I'd go and talk to someone to get some advice. I know here in the UK that would be totally unacceptable - I work in the HR field and I'd have a colleague hung drawn and quartered for saying, can't imagine what I'd do if it originated from the HRD themselves!!!
Here's my list, I've cut and pasted from a previous post - I don't take any meds - OTC I take Nytol a herbal remedy to help me sleep.

Vitamin D
Vitamin B Complex
Multi Vitamin
Glucosamine Sulphate
Ginkgo Biloba
Fish Oil

There is a good sticky at the top of this page with great info on re vitamins

I use a light box daily
Exercise ususally daily: pilates/low impact step/low impact aerobics/aquarobics/swim/walk
Daily stretches
weekly massage
Use my massage bed as and when
Hot tub as and when
Hot showers
Heated neck wraps
Heated pads (sitting on one now!)
Heated/mobilising car seat cover
Wear hats/gloves/scarves when cold
Wear layers when cold
Avoid air conditioning/draughts
Sit at laptop for no more than 30 mins and then stretch
Keep changing positions on sofa/chairs
Lots of water (when I remember)
Avoid processed foods
Avoid sugary things (very difficult for me)
Lots of fruit and veg
Positive Self Talk
Get others to help eg carrying shopping
Meditation (just started)
Read lots on FMS
Holiday in warm climates as often as I can!!!

Old 11-08-2009, 11:01 AM   #3
Junior Member
Join Date: Nov 2009
Location: chicago
Posts: 39
untouchableme HB User
Re: Things that seem to help

Thanks so much SL. Yes, the HR thing is pretty horrific and I know its illegal, but it is what is. Other than being told I need to hide any signs of my disability my firm has been pretty good to me - although I'm pretty sure they'll let me go as soon as my FMLA runs out. But they have a business to run, I get that. And I hate knowing that my performance is being damaged by my illness. I take a lot of pride in what I do and care for my team, they deserve someone who is at the top of their game and that's just not me anymore.

I think it's wonderful that you can manage your condition without drugs. The hospital I'm going to next month practices a multi-disciplinary approach which includes holistic methods, psychology (Cognitive behavior techniques etc), physical therapy, medication, family counseling etc. I'm very, very excited and know I'm really lucky to be going there.

I did read the vitamin sticky the other day but am putting off trying anything until my evaluation. It's very important to me that I take ownership of this thing, whatever it is, instead of letting it own me. All of the posts I've read on this board have given me so much more knowledge and things to think about...everyone is an inspiration and I'm very thankful to have found this place.

Old 11-08-2009, 04:12 PM   #4
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thesweetlife HB Userthesweetlife HB Userthesweetlife HB Userthesweetlife HB Userthesweetlife HB Userthesweetlife HB Userthesweetlife HB Userthesweetlife HB User
Re: Things that seem to help

HI untouchableme - I noticed you're in Chicago. I'm moving to Italy as soon as we can find land and build etc. Interestingly a plot of land that we went to see was owned by an american lady who used to live in Chicago! It turns out she has FMS - before she moved to this part of Italy (the italian riviera) she had been bed ridden for 2 years and in a wheelchair for 1 - I would never in a million years have guessed that was the case - she was completely mobile which was amazing. She says that she still has days when she's not so good but on the whole leads a very different life. I imagine that Chicago is FREEZING in winter - is it possible to move anywhere with a more moderate climate in the US (I know not everyone wants to up and leave never mind go to a different country) It realy shocked me to hear how awful her FMS was before her move - and she made the move for her health reasons!

Old 11-08-2009, 04:35 PM   #5
Junior Member
Join Date: Nov 2009
Location: chicago
Posts: 39
untouchableme HB User
Re: Things that seem to help

Hello Sweetlife,
Yes the winters here are atrocious, even without FMS. I would like to move to Portland OR but it will have to wait until my daughter is finished w/ jr. high. She's been attending the same school pretty much since we moved here (she was in Kindergarten) and her friends really mean a lot to her. We don't have a large family and with me sick the support she gets has been invaluable - I want so much for her to have a somewhat normal life.
Italy sounds scrumptious, I've never been to Europe so I can only dream. Actually my daughter would love to go to Italy, she's currently obsessed with the Twilight series (is that big in the UK?), and especially the Italian vampires, lol.
I imagine the UK isn't exactly the best for your health either, cold and rainy most of the time, is that correct. But you do have those lovely gardens.
Take care,

Old 11-09-2009, 01:52 PM   #6
Join Date: Oct 2009
Location: Florida
Posts: 62
Misha5332 HB User
Re: Things that seem to help

Wow!... I'm fortunate enough to live in South Fla.... which is very warm. I was born and raised near Chicago and I couldn't imagine dealing with the cold. Here, even little weather changes affect me.... I don't think I could deal with 20 below at all. It seems like the sunshine helps alot... I don't know vitamin D? .... It's overcast today and I feel lousy....

Old 11-10-2009, 06:45 AM   #7
Junior Member
Join Date: Nov 2009
Location: chicago
Posts: 39
untouchableme HB User
Re: Things that seem to help

Hi Misha,
Funny thing is I moved to Chicago from FL. I lived there for 10 years, 3 on the barrier islands (Eau Galle) and 7 in Orlando. People think I'm crazy for moving here from FL - most people do the opposite! But I have a little bit of family here and after my marriage broke up it was important to me to provide my daughter with as much of a support system as I could.
I've always loved Chicago, the architecture, the people, the history - all the amazing things the city has to offer. Also, IMO there is NO better place to be than Chicago on the first warm day after winter. Everyone is out and about and smiling, there's such a great vibe in the air because we're all just so damn happy that it's 50 instead of -7 w. a 23 below wind chill! I've now been here 6 years, and I have to admit that the bloom is off the rose. I manged the winters pretty well up until last year. We had tons of snow and the city is pretty much bankrupt so snow removal suffered. Due to my back/neck injuries, shoveling is near impossible. I can do it but I pay dearly. This year unless things improve drastically I don't think I'll be able to. Right now, I can barely get out of bed.
Anyway as far as things that help, I thought of a few more:
Aloe Vera gel: Works really well on my cankersores (see my post under "multiple diseases").
Soft stuff: Pretty non-specific I know, but I tend to surround myself with anything soft - I give thanks daily to the Gods of Velor and Polar Fleece . When my arms and wrists are hurting, just resting them on a pillow seems to bring me comfort, same for my back. Last year for my my bf bought me one of those memory foam pillows - it is now my dream to have an entire mattress. My cat helps too, she's very soft and I believe pets have a lot of therapeutic benefits. The trick there is making sure you don't have more than you can handle, which is why I only have one.
Heating pads: I'm a huge fan of those Thermacare patches, they really last and you can use them under your clothes. My bf has heated seats in his car and I often joke with him that if the one on my side ever breaks I'll have to find a new guy
Ear plugs: I've always been sensitive to noise, but the past year it's really gone into overdrive. The earplugs don't block all sound, just soften it some. They also come in handy when my daughter is asking me for money, lol.
Eye mask: Same principal as the earplugs. Sometimes shutting out the world is the only thing I can do.

Still hoping for some tips on the hot flashes/cold sweat thing, right now my hands are freezing but they're also sweating so badly it's hard to type - ugh!

Peace to all,

The Following User Says Thank You to untouchableme For This Useful Post:
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Old 11-10-2009, 01:48 PM   #8
Join Date: Oct 2009
Location: Florida
Posts: 62
Misha5332 HB User
Re: Things that seem to help

I do love Chicago.....Big City feel with nice people.... and fall and spring......I miss it....
I like your idea of soft stuff.... I have a fluffy robe that I enjoy.... I think I'll try to find some more soft things.... polyester drives me crazy... and I'll try one of those memory foam pillows.... I already have heaps of pillows on the bed.... I'll also try that aloe vera gel... I've just started getting small sores in my mouth... I attributed it to brushing to hard, but I don't think so, now... The sores are in the wrong places.
I agree with you about the pets.... I have 2 75 pound dogs.... that sometimes are too much for me.... I'd love to walk them more, I just don't have the energy.... But they are comforting when they lay next to me and snuggle....I think they understand because they jump on everyone, but me. And if you hear anything to help the hot/cold thing, let me know... I have a blanket that goes on and off and I keep fidgeting with the thermostat.... Oh well, hope your days are better....

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appetite, meds, nausea, sweating, therapy

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