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FIBROMYALGIA: Almost a last ditch effort for finding help.
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lorip123 posted:
I've been diagnosed, but nothing has changed, in fact I've gotten worse. More flare ups and more symptoms have crept in. I'm tired of looking for a good Dr. who will help and look at the whole picture instead of treating my pain with this pill, and my headaches with that pill, and my depression with yet another. Every time I'd go in, it wasn't really addressing the whole Fibro issue, it was the problem of the day. I need some success stories and where to look for a Dr. I'm sick and tired of not having a life, friends, work. Truthfully as sick as I am of it all, the people around me are too. Although some are supportive, they just don't get it. Well, neither do I, but I get the pain and lots of other stuff too!
Help from anyone would be great!
Thanks!
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dollbug responded:
Hello lorip and welcome. Sorry that you are dealing with the wrath of the dragon and trying to figure out what to do that will help you cope better. I am sure that soon things will indeed get better but it does take a trial and error process to find the right combination of *tools* that will improve your pain. So hang in there and continue to educate yourself with all of the information you can find. It is indeed a challenge for *all of us FMers* to do this.

I would like to encourage you to be sure and speak to your doctor about getting your Vitamin D level checked...which is important for a lot of people these days. Low Vitamin D can cause additional pain and it can also affect other illnesses as well. It is just a *simple blood test* BUT you MUST ASK the doctor to run it....as it is NOT included in the normal bloodwork that the doctors do.

Check out the info here under *tips* and *resources* and be sure and read the *member toolbox*....as I am sure you will find some good *tips* on things that perhaps you have not thought of trying.

I am not sure that most doctors truly understand FM enough to know how to treat us....we are all different and what helps one may or may not help another. You have to be the judge of what you find that helps you. You will get some good ideas though here on things that you can try.

As for family and friends...well...most of them do NOT have a clue what we face each and every day. Like you said a lot of us FMers do not even understand this mean and ugly illness ourselves. Regardless of how much you try to explain they just do not *GET* it. We do know what you are dealing with though since we have been there done that and we wake up each and every day facing the wrath of the dragon, aka FM every day.

A lot of us FMers have multiple health issues....I know I did and only when each and every issue was addressed did I finally get to where I felt better. Just recently I had extreme lower back pain and no doctor could *find* anything causing it. Thanks to my DD (darling daughter) I ended up trying P5P and my lower back pain is now under *control*. P5P is a processed form of Vitamin B 6.

I am one of the FMers here who has learned how to *control my FM pain by taking vitamins and supplements and doing other things as well. I tried different medicines in the beginning but did not find anything which really helped me cope better without causing other side effects...I did my own research and continued to try different things and finally got my pain level under control.

So this is possible....you just have to allow yourself time and effort to get through the process. There are no quick fixes or things that will work overnight. But I am sure you will find something that will help ease the pain you are dealing with.

Have you tried using a heating pad? Some of us have found that this is a good way to find some relief. Doing gentle stretches and/or exercises is a good thing as well....(GENTLE, being the key word here). Drinking a lot of water during the day might also benefit you. Continue to move no matter how bad you feel....we have to keep moving so that we will not allow our muscles to get stiff. Learn how to pace yourself and do this every day with everything that you do....this is hard for me but it is very important...because when you push yourself or *cross the line*...you will surely pay for it...every time. Taking a hot shower at night using lavender bath salts right before bedtime might help your body to relax so you can sleep better. Sleep is so very important to us FMers. Stopain Spray is good to use also on the spots which just will NOT stop aching. (you can find it at walmart's for just under $

OK....this is just a start. I do NOT know if you have tried an of these things and if indeed any of them have helped you.

Hang in here with us though and I am sure that soon you will indeed improve how you feel.

Take care.


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

 
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kandscreeley responded:
I'm sorry to hear that you are struggling. I think all of us with FM have been where you are at one point or another. I wish I could point you toward something that would absolutely work for you and make everything better, but unfortunately, it doesn't work that way. Each and every one of us is different. I encourage you to get on the internet and do some research. Be proactive in your own treatment. Hang in there and good luck!
 
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missist replied to kandscreeley's response:
Hi Lorip,
I hear ya, I feel exactly that way too. It is tough and certainly not enjoyable to feel alone in the midst of everchanging problems and on top of it to know that nobody can 'get that' and that you've worn out your loved ones with your issues. I think sometimes of a book in the Bible called Job. Job had a bunch of friends who sat with him in his extreme grief and his illness & poverty, all that came on him in a really short time. For a while they did sit with him, but then they got sick of it and started to pick on him in an effort to make him get up and get over it.

Sadly, with fibromyalgia-- there's no 'getting over it'. you have good days maybe even a remission for awhile, so you get busy and think hopeful thoughts, and then bam! it comes back.

I too am really tired of drs that treat 'a symptom' I just left my current dr because he literally told me I'd need to schedule a separate apt. for every question I had! LOL. that would have been 5 on that day.

Anyhow--we end up doing our own research and learning more from each other-- thank God for this group!--than we ever learn from doctors. Sad but true.

I will pray for you, hope you come around and glean what you can from others here--some have tried a lot of things and many have found solutions that may help you too. If nothing else at least you won't feel quite as alone.

God Bless! Mary
 
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TurtleRunnerNC responded:
Lorip,
I'm sorry that your doctor doesn't seem to want to address the Fibro. Certainly time to find a new one. Maybe you could do an online search that might show reviews of the doctors by actual patients.

I was diagnosed about 6 weeks ago and am almost one month into treatment and I am doing better. Not 100% but so much better. I am taking Trazadone for sleep and Savella for the Fibro. I am still on the Titration pack but am up to the full dosage and it is already helping. Dr said it could take 4-6 weeks to work. It did cause me a bit of nausea for 3 weeks and still if I don't eat enough when I take it. I get exercise every day, drink lots of water and take my vitamins.

I still have pain but it's down in the 1 to 2 range mostly. Sometimes higher but not like it was. Still if I over do it then it will shoot back up to an 8 or 9 so have to be mindful but as long as I am I do ok. Still fight fatigue some , mostly toward the end of the day.

Good luck. There is hope.
Turtle
 
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bette_kaffitz responded:
Lorip,

Please hang in there. Help is on the way.

Have you ever addressed your doc's apparent lack of interest in treating your fibro? When I did, he told me it was because he felt so powerless to help. He is as frustrated as we are that nothing works really well.

But he helped me find a neurologist who gave me a major battery of tests. (MRI, CT with and without contrast, blood studies before and after lunch, a whole bunch of antibody tests, and a 24 hr urine test. I think that's all.) Before I left the office, he called my pharmacy and okayed Fentanyl patches (with the 3 month Rx to follow in the mail), and wrote Rx's for amantadine, neurontin, plaquinel, and a higher dose of ambien.

That was a turnaround for me. The daily migranes stopped. I was able to stand for 10 minutes instead of 5. The fatigue was less prevalent. And, of course, the pain patches dulled the worst of the pain. That was about 20 years ago. I no longer need all those meds, but I still have the fibro. It's just not quite as devastating. (Of course, at 70 I'm not as active as I was at 50. I can rest whenever I want to. On the other hand, I get more of, "Well, what do you expect at your age?")

The key for me was to be honest with my family physician, to let the neuro see me in a horendous flare, and to be willing to try meds that were meant for lupus, chronic fatigue, MS, and other non-fibro illnesses. This got me over a very big hump.

Keep searching until you find your extra help. If you are in a particularly bad time, you may need some bigger guns to knock you out of a prolonged flare state.

Bette
 
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Anon_2912 responded:
I can see how doctors don't really know what to do with FM patients...

It has over 100 symptoms and just about everyone in the world has one symptom or another in their life time.
 
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GGLS19 responded:
Hi. I'm Gail. I won't bore you w/ my Fibro and Osteo Arthritis (in every joint, inc jaw) story, other than to say I had symptoms of both starting at age 19 and was finally diagnosed in my mid-20's. I'm nearly 45.
I used to do a lot of research but gave it up for a while. Seemed pointless...until recently when I discovered and joined 2 specific pages, closed goups, on Facebook that have, through connecting w/ the "community", given me hope once again, and total support. I used to think I was the resident expert on FMS. Boy, have I learned that I'm not. More help and knowledge and acceptance is out there than I realized. If you're on FB please search the page FIBROMYALGIA. The other is called FibroTV. I also invite you to friend request me, Gail Lester-Salyer, and we can stay in touch. I post health things b/c I have friends who live with the same, and worse, challenges that we do.
You are not alone!!!
 
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meg_k replied to GGLS19's response:
lorip123, Don't give up. We've all been there -- just where you are -- and we are all now experiencing some level of relief from our symptoms. There is hope.

My own doctor kept telling me "it's chronic" at first when I tried to ask her what I can do to get relief from FM. I initially took this to mean "Deal with it and stop bothering me. There is no hope." I seriously considered changing doctors, despite our long-term relationship.

Then I decided -- on suggestion of my psychiatrist, which angered me at the time -- to do my own research and come back with specific suggestions of things I want to try. I did this and she has been 1000% percent supportive of everything.

I agree with the comments above about some doctors are willing to help, they just feel powerless. But there are things you can do to feel better. Many great suggestions just here on this page.

You deserve a better quality of life, and it is possible. Hang in there.

Meg K in MN
 
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fibrofran17 replied to meg_k's response:
This is to ALL who suffer fibro...I am infuriated to find out that my B12 level is 8 on the lab test. 8!!!! If you look up the symptoms of B12 deficiency ALL my symptoms are listed right there, the same list I give every doctor I see every time, and am ignored. They tell me my B is low to take a vitamin. I would have to eat 3 bottles a day and never get it up to the normal range in about the 80's or so to help my nerves, mood, exhaustion etc etc etc, nausea, dizziness. etc. We know the nerves have a coating, forget now what they're called, that they say is what happens with fibro, AND that is a deficiency of B12. Now I have been taking megadose injections for 3 weeks and can't believe how the exgaustion/fatigue mentally, and physically has showm improvement. I know it will take months to be normal but when I think of the piles of meds I swallow for each symptom each day and it's only a vitamin deficiency???????? I recommend y'all get a test done and insist on seeing your numbers. My D is a 6! Just found out I have Celiac disease, no one bothered to mention malnourishment over 62 years would deplete me. I've been running on EMPTY. thanks for listening here, fibrofran
 
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Wolfsong452 replied to fibrofran17's response:
I asked my doctor about my B vitamin. All they would tell me was that it was right in the middle of normal.

I tried to get them to give me the exact numbers, they kept saying don't worry about it.

ack!
 
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Wolfsong452 replied to fibrofran17's response:
just googled vitamin B 12 and D vitamin,

now I'm screeching!

knew the big about D,

I knew that B problems always made me tired,

didn't realise all the other things could be a problem,

depression, nerve pain, memory loss, balance problems!

duh !

how many times I've fallen in the last year, or at least did the almost falling dance. You know, you catch yourself falling, so jump the other way, then that side jumps back to the other way.

have been blaming this on my bad knees, my weight problems,

which this could be a lot of it,

but! Vitamin B and D deficiency

bummer!

and people keep telling me quit trying to be a doctor, let them do their job!

duh!

double Duh!
 
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dollbug replied to Wolfsong452's response:
Hello Sharon...It does pay for us FMers to do our own research when it comes to what is going on with us...only we know just how we feel and can relate it to what we read. I have found this out from doing my own research on health issues. I also have learned some things from the man at the vitamin shop who goes and studies about what can help people. I guess they have to be knowledgeable so they can direct people in the vitamin store.

But you know more than anything else it is indeed a *trial and error process*...for us since we never really know what might help us cope better. Things affect people in so many different ways.

I still do NOT quite understand why doctors have problems with checking our vitamin levels...but it seems that this is the case for me with my doctor.

I think that too it makes a BIG difference for us living in such a fast paced world these days. Lots of people eat what I label *junk food* and do not get the vitamins that are needed to keep us healthy.

I hope things are going ok with you...and soon you will find something that really helps you cope much better.

Take care.


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

 
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booch007 replied to dollbug's response:
Good morning,

I was just reading up before I spoke as I wanted to point out the defeciency leads to a type of anemia. That it lowers your red cell count and THAT...being anemic is where tired and exhausted come from. Short of breath comes from anemia too.

Though I have thought of shooting myself with B12 as there is a sense of wellness from getting B12, this was very popular in the 60's for Dr's to shoot (particularly women) with B12 to give them a BOOST.

B12 is NOT absorbed by the gut well due to gastric juices and you need intrinsic factor to be ready to capture it for absorbtion. So IF you are going to go for it here....pick up the sublingual type. (under the tongue pill) for the 'best for your money" chance.

B12 injections do the best.

I too am celiac/Intolerant and many sensitivities to foods now. Nuts have joined the list...I am sure leaky gut is in my quilt of isssues that brought me here......My B12 has never been tested that I know of. (but I am not anemic in any way) When I go to work next week...I will run a panel of it all to see where I am at. I take Vit D3 2000 a day since the load of 50,000 a week x2 runs.....so it is time to recheck the D

We so help eachother here with the observations and the paths we have stumbled upon. Being pro active in your care is imperative. Again I have to mention the Dr Starlanyl books that I own as a great guide to self help and understanding.

(no there is no kickback for the mentioning) They are really useful for survival. "FM and Chronic Myofascial Pain, a suvival manual 19.99 on amazon.com and then all the other books that follow in that search. P R I C E L E S S.

There is another thing...in your CBC when they look at the cells, there are changes when you are deficient in things...like pale looking red cells, swollen and large cells amoung normal, small pinhead like cells and some normal...so a level is not always followed when they do the (differential) to the count and all looked OK. All cells are examined under a microscope and they report that.

Maybe if so chronic it then is seen...but B12 can't hurt you to try a bit. If you are going to try it..sublingual tablets, but the injection..is the best case senario.

Had to chime in here............

Nancy B .
 
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fibrofran17 replied to booch007's response:
Fibrofran here again, so I never show up anemic, my red cells normal, yet STILL have no B12 in me! its supposedly stored in the liver? my liver is fine....so I am so angry that I sit here suffering, spending my last dime on vitamins, ALL of them every month for years, and I've just been spinning my wheels in to the ground. Sorry, the ineptitude out there is disgusting. ALso. the labs are so screwed up too, the docs can send the tests to 5 different labs and get 5 different results down the line. Think about the implications of all this...I really try to be positive but the implications make me throw my hands up. All the falls,, I carry a cane to stop the dizziness, almost fall about 10 times a day, BUT I LOOK GREAT! I've had too many mri's etc etc, nothing. The tests are torture for fibros. All I do is research, research research everyday to find some help for myself. If I ask for my re3st results the docs get pissed, and they I won't get the Rx's I depend on and I am a difficult patient. The Doctors are supposed to do it damn it. I read that most neurologists didn't know all the all the additional warnings put on their meds in years, keep giving out the Rx's for the drug without a clue to how they will affect people. Sorry folks, bad bad week, year etc.


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