Fibromyalgia Community

Hello and sorry for what you're going through. I should first mention that if you really have strong feelings about suicide, contact a helpline immediately. Secondly, you're not alone--many people here have made similar comments.

With FM and myofascial pain, there are no quick answers, unfortunately. Those of us who are at the stage of "coping" are here because of years of figuring out the right combination of meds, diet, exercise, and more. I hope my saying that does not discourage you but encourages you to keep on trying to finds ways to cope.

You mentioned your sleep. Fractured sleep is a hallmark of FM and makes pain/coping worse. Doing what it takes to get better sleep can really help. Personally, I take melatonin and that helps pretty well. However, like right now, I'm sleeping terribly so I will probably be adding benedryl and/or valerian root. Goes to show it's a never ending battle! I'm still pretty tired and I can tell I don't get good, restorative sleep, but I'm better off than I used to be.

I use vicodin for my pain and that actually has done more to help me than other meds. But I understand that they make you foggy, and yes, they could be contributing to changes in personality. It's been a great med for me, but we're all different. I have read about some people detoxing off all meds but it's something you need to do carefully and when you have the mental/physical energy. Experts would say to consult your doctor.

There are other antidepressants out there. Wellbutrin really helped me with depression and energy, but not so much with the pain. Other meds similar to Cymbalta are Effexor and even Savella (not available in generic, though).

Money stress is a huge issue in this forum. It is awesome that your company adapted your job for you. Hopefully some other coping strategies will enable you to function better at your job, because you don't want to let something like that go!

Exercise is really hard to do, especially to start but it has helped me a lot to have less fog and more energy. Start slow if you can--like do only two minutes of walking. Do that until you feel okay, then add 1 minute. If it flares you up too much, go back to 2 minutes or increase to 3 minutes when you can.

I've found that I have a huge decrease in foginess and an increase in energy when I eat little to no carbs. I especially eat a pretty large, high protein breakfast. I don't even eat fruit in the morning. I'd say this adjustment has taken my fogginess down to almost nothing. Of course I have my moments, but it's not a daily struggle anymore.

Read as much as you can here. You'll find that your story is understood by many. I know our regulars will probably post with their recommendations. There is light at the end of the tunnel. The light is not having our old lives back, but being okay with our new one.

I'm glad you are getting some treatment for your pain, but sorry to hear you are feeling groggy often. I know those type of pain meds can make me feel sleepy and then depressed more than my usual level. I don't know if you've ever tried a different type of pain med, like Tramadol, or not. To me, I feel more energy, and less pain, which is all a good thing! Just a thought to offer your doc in the future, if you wish.

Working out of home sounds ideal, but even that can be hard when you're having a bad FM day.

Take care on vacation, so you won't need a vacation after 'vacation.'

Hey I saw this and had to write you back. I am hopeful
that others will hug you and give advice as well.
We are so many here now and have walked a road so similar...it is not an easy thing to deal with and added stress of the doctor *fit is just the worst. .

I would like you to look under resources for the Members Toolbox and see some of the tricks that we use to help. Your meds fitting is so important though and some supplements help as well. So read ALL the posts to see the blend of help we use.

I am a WC case and I am not in issue with my attending. BUT I started with my insurance and then when I saw the care fit me I told them it was workmans comp...I got in a little trouble with the switching of all the paper work and took no copays back. I thanked them for helping me so much and I am still there.....it is 13 years.

I HAVE A LAWYER. It is foolish to try and wade through this system without one. They get nothing really it is small returns from each client, I was a big score for my position and income loss was big. But I was so grateful for the help and I just needed to show up. (felt God played a role here to help me)
I was working 3 jobs...the ICU, Hospice and the stress lab when I got hurt lifting a paitient and was never able to return to the unit again. . I miss it so much, but there are other plans for me, another path I needed to take.

I applaud your job for letting you work from home, just don't be too comfortable there....the less you do, the less you have! We need to keep moving and going to the office is a push that pays off in the end. If I worked form home...I probably wouldn't even come out of my pajamas*! My mind needs the distraction and socialization the office gives me. It is always a painful day, we just look to get lower pain to function.

I also have said we live a groundhog day*. No matter what you attain the day you are in and feel better, the morning you wake up.....you have to start working on better again. (It happens when I nap too). The stiffness and pain (burning, knifelike, pinprick, muscle tension) It all starts over again. .

It was overwhelming to think of this for the rest of my life, but I don't go there...I think of today and this moment. Otherwise it is just too much to handle.

There is NOTHING that bad to leave*****. I was there too. Had my plan and knew what I would do. This was before the right fit MD and then I had my first son marry.....(best DIL) then God gave me a grand daughter ON MY BIRTHDAY.....all at the hospital said "God doesn't make mistakes...he is telling you something" I cried at that hospital as I know he was telling me to stay. My life now is so much better, I never thought it could get this tuned up...(yes I am in pain, especially now) but I know the tools to get out of trouble and what works for me. This takes time.

YOU FOUND US....B I G !

Stay and learn from all the fmily. You are fmily too now. Welcome and please post often, share you woes and needs and questions. Fill in your profile so we can get to know you better. A tune up is coming.

Get the lawyer and see how that helps. I will say I asked for a psych assist from the judge, before I joined the fmily as I was in trouble and he granted it..then the lawyer said "yeah try and find one who will take it" I didn't even try.....I found the fmily. ALL I NEEDED.

Validation is so powerful. As an established patient with the neurologist, turning to WC was a given they can't abandon you. So it is a thought.

You have rheumatology, physical medicine and rehab (physiatry) and pain management as avenues for care. I use neurology with a specialty in myofascial pain work...and use trigger point injections to keep me together. IT IS MY THERAPY...after many other tries at stuff.

I even did a strong magnet on my back.....I would have hung upside down if i thought it was a valid assist. This is a brain chemistry thing too...you need to alter it a bit with something.

Good luck and hugs from me: Nancy B

Hi

The suicide thing comes and goes and hopefully I will always win, my daughter has saved me so far. I just couldn't do it to her.

I have a therapist and she was going to try Wellbutrin but hasn't called back. I'll give her a call. Hydrocodone gives me energy and takes the pain away but I become impaired and can't live my life that way. Plus sleep gets very cyclic. 6 on 6 off type of thing. Reminds me of the Navy.

I walk my dog twice a day and think it helps but sometimes my hips burn in the joints and my feet hurt a lot always. Went to a podiatrist and she gave me shots and it didn't help at all.

Thank you for taking the time to respond.

Hi,

Tramadol didn't work for me. The brain fog thing has gotten worse (and the pain) and I haven't increased pain med use. That's what scares me the most. If I lose my mind then what do I have left?

Thanks for responding.

Hi,

I was a fool and trusted that the system would take care of me, that I didn't need a lawyer and the medical community wouldn't shut a door in my face, so I told the truth and just can't bring myself to lie about this to get help (of course there was a police report and I was taken to the hospital from the scene so it would have been hard to lie about how it started). I haven't tried the VA and think maybe I should.

My company is fantastic and I hold them in high regard but it's a hugh corporation and once my VP goes I know I will stick out like a sore thumb. I want to find another job because I need to get out and see people. I have little family and very few friends in the area. (very long story). My company is located in CA and I'm in CT so I don't ever get to see them (once a year or so)

I have bad credit (the ex wife) and am 51 not to mention my health so I am afraid to try to switch jobs.

I'm glad I found this place and will try to learn. I'll get my Vid D and B checked for starters.

I have no idea how to find a massage therapist but think that would be a good start.

Thank you for taking the time to respond.

Karl

Karl,

Regarding finding a massage therapist. I regularly go to a Massage Envy clinic near my house. I know they have locations around the country - perhaps there is one near you in CT. A quick search on the Massage Envy site could tell you if there's a location near you. www.massageenvy.com

The Massage Envy I go to has several different therapists - and I found one that is knowledgeable about Fibro. In fact, her sister has fibro. The massage therapist will customize a massage to your needs.

I'm glad you found us! Great people here - and LOTS of good information! Remember, you can always ask Dr. P or Dr. Margaret a question. Put one of their names in the subject line of your post.

Hope this information helps.

Hi

Thanks for replying. Massage envy is too far for me but the are a number of places close by. Guess I have to jump in and try one. Do you know what type works best for our condition? I don't under stand all of the terms.

I hope you have a great day.

I'm not sure if there is a specific type or technique that is recommended for fibro. The Massage Envy website describes the different types of massage very well. By their definition, I have a Swedish massage that will vary on whether it is light or medium pressure — depends on how much pressure my painful muscles will allow at the time of the massage. At the beginning of the session, my therapist will ask me about how I'm feeling and what areas she should work on. She will ask during the session if the pressure she's using is okay. I have found massage helps to reduce my tight muscles and helps to relax me. Usually at the end of the hour, I am so relaxed I just want to sleep on the massage table!

When you find a massage clinic near you, I wouldn't hesitate to ask if they have a therapist who is familiar with fibro.

Good luck!

Efflurage.........(spelling?) This is large sweeping motion that moves the blood around in the muscles. It is gentle and comfortable. They all ask "Is that OK...not hurting you?" sometimes they are hurting me, but I know the area is in need of stimulations and more drainage so I say nothing. ALWAYS BETTER after. I also only use the chair....so gravitiy is on my side. Laying on the table bothers my neck and it is not a normal position for me.

I also have done trigger point massage. SO PAINFUL...just works the knots and a little efflurage to help with the pain. Not of benefit for me, I would leave nauseas and a mess. That was when I changed to injections, fast and *to the point!

I just go to a nail spa and the girl there is wonderful...20.00 for twenty minutes and if I am really feeling abenefit I add 10 minutes more. I never do more then 30 minutes no matter how bad I am. Took a while to find this girl, some are awful...

Drink alot of water after to help move any junk removed from the muscles and hoping it helps you. My neck was locked on Monday and didn't have shots til tuesday so I went in....yup, freed me right up. For 20.00....so worth it.

Good luck, Nancy B

Hi, I read that your feet hurt and some others say their feet hurt. Where does it hurt? My feet started bothering be about 3-4 years ago although I have had fibromyalgia since 1994. I can't go up on my tip toes. Feels like nerve damage not weak muscles. Of course no doctor I go to has ever seen anything like it. Had a MRI of every part of my spine but nothing shows up. I was just wondering if your feet problems were anything similar. I can hardly walk at all.

my feet are numb all the time or they feel like they are on fire. this started about a year ago and no doctor can tell me why. I thought that it might be savalla because I started taking that when it started but I quit taking in about 3 months ago and nothing has changed. I sure wish I could figure this one out.

Had the burning feet,in my 20s-they would be so sensitive when they were like that-putting my feet on the ground hurt.The soles of my sandals turned black,on all the ones that I wore.When I say soles of shoes-I mean the part that is in contact with the soles of my feet.It was as if my shoe was burning up and turning black from the heat of my feet.Doctor did not know!Had that for several years.Then went away!Had Polio when I was a kid -in iron lung-almost died!But I was lucky-did not end up in a brace-but always have problems with my back & from waist down.Some numbness in legs& feet plus severe leg cramps(hip to toe).which progressed to both legs cramping at same time!!WOW!! The numbness in legs&feet progressed over the years,accompanied by Pain in legs which keeps getting worse as the years go on!For 20 years,spent my nights pacing the floor-Coul'nt sleep due to pain-worked days&shift work till finally they decided that I was too ill to work!Eventually,diagnosed as Post Polio &then later as Peripheral neuropathy by another Doc who did not recognise Post Polio.Today,I have a difficult time walking-Have 24/7 Pain at an averge of 8daily while taking MS CONTIN 120mg 3Xs/day PLUS Dilaudid8mg for breakthrough.But I always feel like I'm on breakthrough although I know that if I did not have these meds I probably would have.......by now!I did'nt have anything for a couple of years ---lost my Doc & ended up stretching what meds I had remaining(Only took 1When I thought of Hurting myself because my pain was so bad)so I effectively went COLD TURKEY w/o any help.The new docs I tried to see gave meGabapentin about a year later-1 doc said this will work much better than the morphine.It Ended up giving me 3-4hr blackouts-where I walked around & did ?things around the house till finally come out of it-to find toaster in my freezer & other things in wrong place.Also ended up with palsy like shakes that were so fast & hard-I could barely move in a straight line>Sorry to go on &On.Started to say -maybe get checked for diabetes because I found out later that burning feet can be a precursor to being diabetic!Do research!EASY in this day!Better to be informed&have some facts when you want your GP to work with you.

There is a website Whole Health.com they have a lot of alternative meds mainly vitamins,herbs and plant origin items. I have bad osteoarthritis and fibro last 30 years ,I use antiinflamatory support that helps me plus sam-e you can read up on all of it to see if any will help you . I was like you on Percocet hydro condone and was allergic to it itched myself raw before I realized it was this. I hope you can find some relief good luck