all in the head!!

[carol.r]

I don't know about any of you but I get the impression that people think my pain is all in my head. It makes me so mad because I am suffering in pain but people don't seem to think it's real.I am tired of trying to relieve my pain with minimal results. I was popping so many pills and not getting any better. The more pain I'm in I getting stressing and that leads to worse pain. I had massages and am taking sleeping pills so I can at least get a few hours rest from the pain at night. Dr. doesn't want to give me anything for pain. she thought some good sleep at night would help but it hasn't.Any suggestions for some alternative therapy that might help me? I am so frustrated!!!

[Laci27]

I've been on Gabapentin for like three years for my Trigeminal Neuralgia. For that diagnoses, it has been a GODSEND. It works wonders, and its on the cheaper side since it is generic. I am on a pretty high dose, but I only take it at night because of how tired it makes me. It takes a few weeks to get the side effects of the med to go away. Im working on getting three tines a day dosing so its better dispersed through my body, but trying to get used to the daytime sleepiness. Which does go away in a few weeks.
As for with the Fibromyalgia, I have never noticed it helping with any of it. Maybe because my body is used to the drug? I just barely got dx a few weeks ago, so I'm just remembering that.
I took some Mobic the other day for my pain, and it worked somewhat (surprised me) have you ever tried that?
Btw I am a Pharmacy Technician so I know a TON about meds, if anyone has questions!

[NannyO5]

I'm understand carol I was diagnosed 17+ yrs ago it was still considered a garbage can illness! I have been to many drs and tried every med, trigger pt injections and physical therapy to no avail.!! I found a great family doc. Who is up to speed on fibro. I had to start lyrica slowly and gradually build up ( I had problems the 1st time I tried It they gave me 75mg to start) I started at 25mg and am now up to 100. But he also gives me percocet 7.5mg for pain. I still have pain but it takes the edge off. So please find a doc who understands fibro and knows it's real!! As for the people that think it's in your head you must educate them or ignore them! God bless

[lady1920]

I buy the genic for muiex at the $1.00 Tree. It comes from Canada. It has help with the build up of phosites in the body & my knots are getting smaller. Almost everyone who has Fibro has knots in their left thigh per Dr. St. Amand, a fibro specialist in Marina del Rey, Ca or if you don't have insurance, I was lucky to see him at Harbor UCLA, but you will need a referral to get in their system & pay about $80. for the visit. Dr. St. Amand has many book on this.

[Irime]

I'll have to look that up, although I have to be *very* careful about what I put into my body.  I tend to be *very* sensitive to things, as I'm reading more and more.  I will give it some consideration, and thank  you for the blessings. :)

[Liz1966]

By the way the drink that I am talking about in my post has increased my focus amazingly.  I truly believe that is the only way that I can hold down a full time job.  I have very few fog moments (far cry from the everyday almost constant fog I was in) and if and when they do come they are not long at all.  I snap out of them very easily.  Prayers to you for pain free days.

[Liz1966]

Read my post of Fibromyalgia treatments.  This truly helped me.  And it is not in your head by no means.  That is usually something that everyone has to face but we are not people that look sick.  People think that we are trying to get attention.  I have been through it all where people are concerned...I just quit explaining and quit talking about it.  I pretty much became a hermit. Not anymore Praise the Lord.  I feel better now than I ever have.  Prayers for pain free days.

[Irime]

Unfortunately there is not one "cure all" for the pain.  It's not all in your head, as you can see from all of the posts ahead of me, and frankly if your doctor doesn't have enough compassion to realize that you NEED NEED NEED to find a new doctor.  I do as much research as I can before I fog out, some of the theories make sense and some of them don't.  I'm still in the *very* early stages of treating my fms/cfs so I can't really tell you what is going to work and what won't though.  3-4 years ago, I had an injury on my left foot, resulting in rsd in that foot... very painful... and they put me on neurontin and a duragesic patch, with vicodin chasers and several other meds that I cannot remember... anyways... not a good combo, and I lost a good couple of years to my life. :)  Today, I'm fighting not to go on disability, to keep my job, and still somehow find relief from the pain and the fog (which a lot of days the loss in concentration and memory can be just as disabling as the pain itself - you grow used to the pain, it becomes an old house guest, maybe unwanted, but familiar-- the confusion... well I never quite adjust to the loss of cognitive function.)

At the moment I am taking Lyrica, but I don't seem to be adjusting to that well, either?  I'm *attempting* to talk to my doctor into seeing a physical therapist, as I believe some medical help in joint/muscle manipulation and a gentle, supervised exercise routine could certainly help me (and is covered by my insurance!!) but he's insisting on me seeing a chiropractor, which I'm not terribly convinced that will help me (I don't have "problems" with my joints, with the exception of my very knotted and tight muscles pulling them out of whack, and misaligning me!)

I'm sure you didn't ask for my life story, but my whole point is DON'T GIVE UP.  If one doctor doesn't suit you, you get a bad vibe about him/her, or he/she doesn't LISTEN and have COMPASSION, consider it like dating and find another fish in the sea.  I've been trying to find an answer for 17 years, and it literally took me this long to find a doctor who truly understood what I was going through.  Within the first visit, he tentatively suggested Fibromyalgia, but recommended an entire SLEW of tests to rule out anything else that could possibly be wrong... and still to this day he's running extra tests by new information I'm giving him (It's impossible to remember every symptom and trouble I have at one time- I always come in with something new for him to ponder.)  He's consistantly attempting to find anything else that could be contributing to my personal problems.  THIS is the way a doctor should act... this is not just about your health, it's about the entire way you look at your life.  Finding someone that can help is imperitave, I don't know if I could stress that enough.

Good luck, and keep us posted.  Trust me when I say it's  NOT ALL IN YOUR HEAD, no matter what media or health care professionals may tell you.  You can certainly find someone that will listen and understand.

[Diane007]

LYRICA has been a miracle for me! I went from being in pain almost everyday for 6 years to being virtually pain free after one day of taking LYRICA. Talk to your dr about it.

[chelbeay]

I was diagnosed with Fibro and CFS back 8 yrs ago.  Presently I am not on any meds b/c everything my doc gave me made me sluggish or would put me completely out.  I know most would say that was great but for years I was a single mom with two young children.  I had to be able to wake at a moments notice if needed and could not do that with Flexaril or Elavil or even Ambien.  I was taking two different antidepressents along with the pain and sleep meds as well as an acid blocker.  I could not take having to take so many meds and being so young.  I still get the "all -in-your-head" from people.  I really dont think that will ever go away.  Stress really made it bad for me.  Luckily I now do not have to work in a corporate setting which has helped.  Anyway, no matter what we do or what we dont do, there will always be people out there who think they know you better than you know yourself.  Sweetie just keep looking until you find that right doctor and do your best to not let those other people get to you.  They only make your life worse.

[lifelongstudent]

I'm new to this group. I have had fibro for 11 years and I am a psychologist. It is not all in your head, but as you stated when you get stressed, the pain gets worse, and our pain perception and senses are unfortunately in our head. Unique twist on the idea of pain. :) Anyways, I run psychoeducational workshops for women who have FM out of my office. We work on keeping stress and depressive symptons reduced.

I know it sounds strange that your doctor would recommend a good night's sleep, but there is a lot of truth in that. We NEED restorative sleep to allow our body to recondition itself. I have taken some form of sleep aid for years. It does not always work. For example we are having terribly damp weather here in Michigan and the last 4 nights I have come up right out of my dead sleep from the pain. I take flexeril to help my muscles relax and for sleep. Tonight I will up my dosage by a 1/4 tab and it should help me sleep better.

I recently was on a panel for Pfizer regarding FM and Lyrica. I am seeing the doctor mid-April to see if it is a good choice for me.

I'm not sure if any of this helps, but your pain is real and I agree with the other folks -- find a knowledgeable doctor. If the stress is getting out of control, find a good support group or psychotherapist to work with. I believe in treating the entire person and am a preferred provider for the National Fibromyalgia Association.

Best wishes.

[marez]

Hi,
Oh so many questions I have had several dx, the first was fibro a million years ago, lupus, ra, and those ruled out now lyme out too anyway down to MS or Fibro. the pain is awful but you mentioned 2 things, mucinex which I have to say does help with my brain fog but I take it for allergies that the tests say I don't have but I swear something is stuck in my head like cotton candy and mucinex does help not sure about it helping Fibro in general but it is harmless (as far as any over the counter med is)

my question to you and others is Methadone??? I have an impossible time getting any pain relief and never heard of methadone for Fibro??? Is this rare treatment or the norm now? It personally scares me, but intrested in the effects it has on you and what they say about addiction and side effects?? also I was asking for a medicine that they use to treat narcalepsy for staying alert so I can have my life back my GP said it is too addictive but if they neuro aggrees they will give it to me. Heck the sleeping meds I take are addictive I want to stay awake for more then 4 hours and be out of pain.

okay sorry chatty cathy just found this site and not sure if I have Fibro or MS or both.
thanks for your information,
mary

[kinglove1]

Hello, new to this however I wanted to post a comment to mayvbe help someone, somewhere.

I have had Fibromyalgia (diagnosed in 2002) I believe it came on from an accident I had in 1998.  Anyhow, I'm on methadone and Lyrica and I have never felt better except now I feel even better than better becasue I ake Fatigue to Fantastic, a powder based drink full of Amino Acids which those who have the disease, need.   In addition, a vitamin basd B12 pill comes with it. You take it in the am if you want and at 3 ish when you get that sluggish and aching feeling.  I've never felt better.  It has been said that those of us who suffer from Fibramyalgia have too much phospherus in our bodies and should look at taking Mucinex.  Apparently there are chemicals in Mucinex that aid in breaking down the minerals we don't need in our bodie which help in the pain level. I have not tried this, I just heard about this last week.  Nothing medically perscribed here accept my Methadone and my Lyrica which have seemed to work very well thus far.  I have three blown discs on my right hip so I'm dealing with that pain as well and on a narcotic so those who have pain medication need to be aware of depression.  I've shared what I know, heard, read to help those.  I pray we all are pain free one day.   Heat really helps.  I hot tub twice a day and try to get an ultrasound appointment weekly.

Good Luck

[PlateletGal]

"Do some research, and try and find a doctor who actually specializes in Fibro patients and you will see results."

You are soooo right. I don't have fibro, but I do have CFIDS and have had undiagnosed CFIDS for many years. I currently have a wonderful physician who has put me on a research protocol that has been curing people with autoimmune disorders and/or other conditions. I am so thankful for my physician and I always reward him and his staff with goodies every time I see him.

[greatlifeforme]

I too have had severe pain for several years, atleast 10. Everytime I went to my family doctor all he would do is give me muscle relaxers, which by the way I couldn't stand.  One little pill would make me lag for days. The pain was so bad, it got to the point where I often thought about suicide because I was tired of living in pain every single moment of every single day. It made it even harder because I am married and have to children to care for.  The pain made me feel like I was nothing but completely worthless.  Finally one day, I heard about a doctor who has fibromyalgia himself, and there was nothing but good that was said about him. I was relieved to know, that there was finally a doctor out there who could actually be on the same level as myself, and know just how painfull it can be and take over your everday activities.  He has totally changed my life!!!  I am happy now, and for the most part pain free.  Before I met him, I tried the Chiropracter ( I thought I was gonna die from what he did to me), exercise, better diet and even resorted to drinking almost a hole bottle of Tequilla a week, just to try and make the pain go away. Nothing helped.  When you go to so many doctors and they do nothing for you, you start to wonder if its just all in your head and you try to convince yourself  MIND OVER MATTER, but the pain takes over your life so much, that the only other thing you start to feel is depression and  you can't even imagine seeing a light at the end of the tunnel.  It all comes down to finding the right doctor.  To many doctors now just see you as another number and another dollar sign. What ever happened to people wanting to become doctors to help people, not to just become rich?  Well, don't give up.  Do some research, and try and find a doctor who actually specializes in Fibro patients and you will see results.  I am in Ohio and Dr. Pelligrino in Canton, OH has changed my life!!!  God Bless You Dr. Pelligrino!!! THANK YOU FOR CARING!!!

[Sally555]

Ultrasound is the only thing that works.

[LLWB]

Neurontin didn't cause any weight gain for me. So glad the home ultrasound is helping you. Keep us posted.

[OneScaredBuckeye]

I know if I start to gain weight from the Neurontin, I'm going to stop it.  In fact, I might ask my doctor for Tazanidine anyway, as it's a muscle spasm that's bothering me more than anything.  The home ultrasound unit does seem to be helping with that, though.  I'm hopeful that in a few months, it will clear it up completely.

[LLWB]

I used neurontin for probably 5 years (or more) and never had any side effects from it. My  dr recently changed to Tazanidine for the muscle spams, and it seems to be helping more. Maybe I developed too much tolerance for the neurontin. I tried Lyrica, but gained too much weight, but other than that it helped a great deal. Probably the best of any of them. But I have type2 diabetes, so couldn't deal with the weight gain. There are things out there to help, sometimes have to just keep trying. A lot of times the dr will have samples to try, until you find the right drug for you. I don't know what state you're in but medical marijhana (spelling wrong I know, in fog at moment) also helps some people tremendously.

[OneScaredBuckeye]

I agree with that.  I think Neurontin is wonderful for some people, but not all.  However, I don't think it deserves the bad reputation it has.  It works beautifully for many people.  Lyrica is very similar to Neurontin.  I've never tried that one.

[patsy10]

I think the neurontin is fine if it helps you and you don't have bad side effects.  Medications affect everyone differently.

[Curls]

Carol - the Centers for Disease Control doesn't think this is all in your head!  Your doctor needs to catch up with current research.  

Onescared - neurontin can be a lifesaver and worth trying.  However for some people the side effects are complete personality changes, including into anger and depression.  Hence the bad rap.  Like all drugs and CFS/FM - it's not one size fits all : )...  

[OneScaredBuckeye]

Why do you think people should stay away from Neurontin?  It has such a benign side effect profile and it worked wonders, even miracles, for me.  I never had one problem with it or stopping it.  It's one of the all time best drugs I've ever taken.  If you need it and it helps, take it!  It can be a miracle to people suffering.

[mothermary]

i recommend you see another doctor and check out FMA.org  or google fibromyalgia awarestay away from the neurontin though, check out pain management site....god bless and it is REAL.find a support group try to exercise in warm water, even if it is your bath tub it will even help, and try to get a massage as well as checking out your local arthritis chapter and read fibromyalsia for dummies  there is so much more out there than when I was diagnosed 7 years ago, and I was way ahead of it from the 3 years prior...

keep a journal for the meds and side effects - ...sorry my computer battery is dying or I'd write more...
god bless and good luck, mary

[patsy10]

I went to that site.  I guess I did good.  My doctor was the first one on the list!