Anyone here with Fibro?

[tink_n_pooh]

I don't usually post on here but I'm looking for any help I can get at this point. I was diagnosed with Fibromyalgia over a year ago. I have been suffering with chronic pain for a few years and it is just getting worse and worse. I've been on Cymbalta, Naproxen, muscle relaxers and various other pain relievers. My MD just put my on Lyrica as well as the Cymbalta this week. I also see a chiropractor at least once a week.

I've had a headache since July 1st. It won't go away. I've been to the MD twice, the chiro3 or 4 times and had 2 massages with no luck. I'm just about at my wit's end. I even had an brain MRI yesterday, that was normal.

I really don't even know why I am posting this. I'm just looking for some help, I'm willing to try just about anything. Anyone else dealing with this? Please tell me there is hope

 

[dyna]

My DD almost 17 has had Fibro since she was 13 yrs old. She also has CFS (chronic fatigue sydrome) and a pain processing disorder meaning pain killers do nothing for her. We had a VERY ROUGH go of it for almost 2 yrs.

For us Cymbalta was the key. DD was also on Geodon for just a short while not sure if that was what gave her the boost or it was just time for her to get better she no longer takes the Geodon tho hasn't for a couple of years weaned herself off it without telling us (little stinker)

Some are having very good luck with LYRICA I wanted to try DD on it until a few months ago when she decided to go off her cymbalta and ended up at the ER in Chronic pain after about a week without the cymbalta we not going off the Cymbalta till we have to it's proven it's self.

Here's a good website that has very good info on Fibro and a very good support group board and chat both.

www.prohealth.com

When my DD got ill I was at my wits end for almost 2 yrs she was not able to function and go to school or anything during that time. There was times for weeks on end she didn't know who I was or who she was and would ask every few minutes. So weak she couldn't walk. Even worse was when she was strong an would fight us an try to go to school in middle of night cause she thought it was time for school or she didn't want to be late. Sometimes would get up get ready for school in her sleep never even opened her eyes drs said she was awake but in a trance whatever it was it was scarey as hell.She even cooked while in that trance with supervision of course.

Once we got the Cymbalta an the geodon that she no longer takes she was able to get back on her feet return to school an sports. The more active DD is the better she feels which was what the drs always said would happen it was just getting her to the point that she could function that was the problem.

Good Luck to you don't give up yet there is an answer out there for you somewhere the same as there was for DD, feel free to PM me if you wish to discuss this more.

 

[KPeveler]

tink - I do not have fibro, but I have CFS, EDS III, and CMP, all of which leave me feeling much like people who have fibro. All I can really do is give you {{{hugs}}} and hope you start feeling better. I hope the lyrica helps.

i suggest you (and anyone else with chronic illnesses, or who have family members with chronic illnesses) check out this site:

www.butyoudontlooksick.com.

Check out the message boards, and read the "spoon theory." I think it is a great site!

 

[dyna]

I can 2nd the "spoon theory"!!!!!

 

[HarbinsMom]

I don't have Fibro, but have RA. I was diagnosed at 25, but was suffering in my teens, but misdiagnosed. I have been on every single anti-inflammatory on the market (for the past 20 years), plus pain meds. Now, 2 years ago, due to Celebrex, my kidneys have begun to shut down. I can have no more anti-inflammatories, even an Advil for a headache ever. The only thing I can take are pain meds. Then, you get the looks from the well meaning pharmacists that think you're a druggie or something. And on top of all of that, I've been dealing with 2 knee surgeries since January and my knee won't act right. I have an MRI scheduled for tomorrow to try to find out why it's not behaving. I've been in physical therapy twice a week since November. Needless to say, I'm a bit bummed at the moment.

Sorry I hijacked your thread. I understand where you're coming from and I do hope you find the combination of things to make you feel better.

 

[tink_n_pooh]

Thanks for the support, I checked out the websites you recommended, they are great.

Just hoping that something helps sometime soon

 

[Earstou]

I have fibro due to Arnold Chiari Malformation I (brain malformation). Weird thing is, since I had my neck fusion last October, I've had very little pain. I don't know how long it will last, but I'm enjoying the break while I can.
The ACM causes headaches also, which I always have.
You mentioned your MRI was normal. Was that after a radiologist read the MRI, or the initial, immediate conclusion? It usually takes a few days for the radiologist to view the MRI and write the report. Sometimes chiari is noted in the report, but discounted as causing problems. So the doctor will not tell you anything was found. I always suggest that people get a copy of their reports and research what the report means.
Here is a symptom list from my neurosurgeons website: http://www.chiaricare.com/welcome-4.html
If a person does have Chiari, chiro manipulation of the neck is not recommended.
Good luck finding answers and relief!

 

[tink_n_pooh]

I have fibro due to Arnold Chiari Malformation I (brain malformation). Weird thing is, since I had my neck fusion last October, I've had very little pain. I don't know how long it will last, but I'm enjoying the break while I can.
The ACM causes headaches also, which I always have.
You mentioned your MRI was normal. Was that after a radiologist read the MRI, or the initial, immediate conclusion? It usually takes a few days for the radiologist to view the MRI and write the report. Sometimes chiari is noted in the report, but discounted as causing problems. So the doctor will not tell you anything was found. I always suggest that people get a copy of their reports and research what the report means.
Here is a symptom list from my neurosurgeons website: http://www.chiaricare.com/welcome-4.html
If a person does have Chiari, chiro manipulation of the neck is not recommended.
Good luck finding answers and relief!

I'm going to call today and get a copy of the results. I have a follow up appointment in 2 weeks but I want to see what the Rad wrote for myself.

I can see on the MRI (it also helps that I work for an MRI company and my SIL is a tech) that I have a cyst and looking at other scans of Arnold Chiari Malformation I patients I would say I am borderline if not more.

WOW! I read the link you sent as well, that is pretty much how I feel everyday. Thanks

 

[Earstou]

I can see on the MRI (it also helps that I work for an MRI company and my SIL is a tech) that I have a cyst and looking at other scans of Arnold Chiari Malformation I patients I would say I am borderline if not more.

The experts say that the size of the malformation doesn't matter, but rather the symptoms.
Unfortunately, there aren't many experts out there. Most doctors will say the Chiari isn't the cause of the problems if it's borderline or smaller. I was borderline, and the first doc told me I didn't have Chiari and sent me back to my hometown to get help. This was after my neurologist diagnosed me and sent me there. Luckily I already had an appt. with Dr. Oro, who has done some research on Chiari, and is one of a handful of experts in the US. So it can be tricky getting diagnosed!

 

[AnnieDan_Artlover]

I don't suffer from fibro, but know a lot of people who do, since I'm a member and co-founder of a local fibro and CFS (chronic fatigue syndrome, aka ME) association.
I'm no longer on the administrative board, but I'm still doing volunteer work (just finishing the quarterly newsletter today!) and I'm their spokesperson about CFS.

I'm a CFS sufferer (and EDS type III, and migraine sufferer too).
Migraines aside, I've had new type, sudden onset chronic headache start with my CFS (one day I was OK, next day I was badly ill). At first I tought it was a bad case of migraines that wouldn't respond to my usual medication, but it wasn't... it was the specific headaches that comes (often, but not always), with CFS (and often, also, with fibro).
I fell ill with CFS in october 2003... I've had this headache since then.
Luckily, together with my doctor, we've found meds that dull the pain a little (the same meds I take for my joints pain related with EDS type III... same meds later stage cancer patients take when they hurt too much and there's nothing much to do except ease their pain...). I also still have to take migraine preventive medicine, so I don't get a migraine on top of that headache too often... Because when it does... Ouch!

I hope you don't have the same kind of headache I do, or that if you do, you're luckier than I am and it goes away soon... or that the meds work better with you.
But if not and it's the same as for me, I can at least tell you this : after a couple months/years, you kind of get used to functionning with the pain. Except for the really bad pain days (because the intensity can vary... hourly, daily... in my case anyways).
Of course, I'm talking about "functionning with the pain"... but I'm not one who can function in the way we usually imply : I cannot work at all and can't function many hours in a day... but the first weeks the headaches we're much more invalidating to me than today. The meds and the "getting used to it" make it so that, if it's not a 8/10 on the pain scale, I can manage it...
(If ever a doctor telles you that you'll just get use to it, not to worry about it and doesn't want to help you in any way and doesn't give you any medication, just leave and go see another!!!
Sure, I'm talking about "getting used to the pain", but only in the way that if I'm doing something else, combined with the medication, it's not as bad as it was in the first months! Not that I could concentrate, think as clearly as I did before being ill, totally lose the pain, leave the meds, or nothing like that! That kind of headache is nothing you can just forget or get used to, go to work like nothing happened... It was hell before we found a medication that helped even a little, and now that we found it, just the 25% of pain that is removed feels like I'm in heaven! That's why I can "get used to it" : I can get used to a bad headache with 25% of it removed. I can't get used to a real bad headache with 25% of it removed, nor to a bad headache with 0% from it removed... Do you get the picture, or does my CFS gets my mental images too scrambled for me to write them down clearly?
Basics are : Pain can be manageable when all you have to do is light chores at home, at your own pace, etc. Especially if you have medication on top for additionnal help. Pain cannot be manageable/tolerable if you have to work full-time, plus do chores at home and have to work a schedule, and on top don't have medication to help! When you have fibro and/or CFS, it's important to find a doctor -specialist or not- who understands that, understands the illness, and understands you. Don't ever go feel guilty because of a bad doctor.)

Remember that people with fibro can be really meds intolerant, meaning that when introducing a new medication, it always should be by little amounts of dosage at a time, and always much less than regular patients... Did you check if your sudden headaches begin around a change in your medications? Just a hunch...

If you need more information, on research and such, I know a lot of websites and could share some with you if you PM me (this is getting too long already!), but there's one I find the best, very complete and mostly, with daily free newsletters on both FM and CFS, with research news, international groups info and even the sometimes political things about our illnesses (hidden agenda of pharmaceutical and insurance companies and such). Go to Co-Cure and follow the "free subscription" link on the left. It's really worth it.

Hope you get as good as you can with your FM...

 

[KPeveler]

annie danielle - we could really use you over at butyoudontlooksick.com/boards. I am also an EDS III, CFS, fibro/CMP, GP, and other icky stuff person. you should check out the site - we are always looking for people to have such a great attitude on the boards!

 

[AnnieDan_Artlover]

Hi KPeveler!
I'm real happy to meet someone so much like me! We should "talk" some more, but I don't want to take over this thread... And since I'm a newbie, I cannot PM you (I've tried). I'll try again later! (I've got a couple of questions, involving WDW with CFS/EDS III and POFQ)
In the meantime, I'll tell you that, sadly, I couldn't really put much time on "but you don't look sick" (can't post links either!)... but what a coincidence : I was just there today, and read the spoon theory... it's just wonderful!
In fact, I've asked the author for the rights to translate it in french and use it for our local association... (yeah, I'm french, explains the language mistakes here and there)... we could use such a wonderful story to help our members explain what it is to live with a chronic invisible illness...

Anyways, I hope we get the chance to talk someday, it's really wonderful to know there's someone else out there who knows what it's like to live with both fatigue and loose limbs

...And, Tink_n_Pooh, keep up!

 

[tink_n_pooh]

Wow, thanks for all the replies. I'm over on the butyoudontlooksick boards ocassionally too! Annie-Danielle, I don't think I can take this headache for years. I work full time, actually most weeks I work seven days a week and I want to go back to school. I just try to deal everyday. I actually feel pretty good today and oddly enough it's been raining all day Most people don't have good days in the rain

My doc did add Lyrica when I saw him on the 1st follow-up with this headache, but that was a few weeks after the headache planted itself in my head. My taking it upon myself to get an appointment with a neurologist as well.

Thanks again

 

[disneymarie]

Wow, thanks for all the replies. I'm over on the butyoudontlooksick boards ocassionally too! Annie-Danielle, I don't think I can take this headache for years. I work full time, actually most weeks I work seven days a week and I want to go back to school. I just try to deal everyday. I actually feel pretty good today and oddly enough it's been raining all day Most people don't have good days in the rain

My doc did add Lyrica when I saw him on the 1st follow-up with this headache, but that was a few weeks after the headache planted itself in my head. My taking it upon myself to get an appointment with a neurologist as well.

Thanks again

I suffer from fybro and chronic fatigue, along with cervical and lumbar issues.
I had a headache for 24/7 for three years. I could reduce it from ER strength pain but never go away. At the base of my skull I could feel the "Knot". It was generated from a trigger point of an inflamed nerve.

A few things helped/ The one thing that helped rid the 24/7 high pain... an epidural spine injection and showed the doc the exact spot of the knot. I had the injection in the C/5 and it covered the spot. Before I left the procedure, I had at elast a 75% reduction in pain...never agin to ER level pain that was days on end......

If I feel it coming on I have toradol, it is a kick butt anti inflamatory, valium as a muscle relaxer, and if needed for high pain days the percocett. THis combination adresses the inflamed nerves, releases the muscle spasms trying to protect the nerve, and pain med to lower levels.

If you are in tears, and for days suffereing high levels see if you have a PCP that has Toradol as an injection, that works better. If not an ER has it, it is not a narcotic so no battle or opinions of seeking meds.

It works really fast.
My Epidural spine injection, did not help for herniations, it did help and nearly cure the 24/7 head pains....not the first one, maybe not the second one, but the third one I put the doctors fingers on the skull knot DID!

Deprol medrol was the med injected.
I also now get trigger points, I have a spot above my wing that feels like a knife stuck in it....from that trigger spot follow up to my skull is the trigger area I have to baby.

Also, topomax, build up very slowly..prevents the headpains.
I call mine cervogenic, they are not though I do get true migrains. Cervogenic do not respond to the typical meds for migrains. The Toradol, and valium will react to reduce the nerve inflamation causing head pain flares.

Hope you find help,
DiMarie

 

[OneLittleSpark]

Sorry for coming in kind of late on this one, but I just thought I'd come along and say hi. I've got suspected Fibro, but no diagnosis as of yet. I just wanted to add my voice the the recommendations of BYDLS; I don't know how I would have got through the last year without all the wonderful people on the message boards (thank you K for introducing me to it ). It's somewhere to vent, laugh, cry, whinge, comfort, seek advice, and make friends, all with people who actually understand, rather than who are just trying to be 'understanding'.

Anyway, take care of you