Old 09-10-2016, 11:08 AM #1
carljr17's Avatar
carljr17 carljr17 is offline
New Member (Say Hi)
Registered Member
 
Join Date: 2016
Posts: 6
carljr17 is on a distinguished road
carljr17 carljr17 is offline
New Member (Say Hi)
Registered Member
carljr17's Avatar
Join Date: 2016
City: clinton township
State: michigan
Country: US
Interest: I have Fibromyalgia, chronic pain, or chronic fatigue.
Posts: 6
carljr17 is on a distinguished road
Default Fibromyalgia for over 26 years?

Hi all, I'm new to the group and wanted to introduce myself. I have such a long history I don't even know where to start, but I'll try to be brief and not ramble too much.

I was finally officially diagnosed with fibromyalgia this year, but I have been enduring the symptoms since I was 17 and it would be an understatement to say that it has ruined my life. I used to be quite talented with computers and at a time when very few people have those skills; I could have been really successful.

Of course, I've been through the medical system so many times and have had every conceivable test (EMG, MRI, PET, SPECT, etc. etc.). I do not appear to have a neurological condition, although my symptoms do seem to suggest that I do. Not only do I have constant pain in my hands and arms (and now my neck, back, and just about everywhere else) but I also feel electric shocks and tingling, mainly in the wrist area or fat pad area of the forearms, although I can get them in other places at times. I can even feel the shocks in my brain especially when I hear sudden noises that surprised me, like the creaking of the door. I cannot at all explain this.

I also suffer from chronic neck pain which prevents me from sitting at a desk. I lay in bed all day, and use my computer with voice recognition (woefully inadequate for most tasks).

Like many of you I also have IBS and can rarely digest anything without severe discomfort. A couple of years ago I was a walking skeleton and almost died. Of course I have had every possible G.I. test and was even tested for SIBO this year (hydrogen breath test) and tested for celiac disease twice. I have tried altering my diet drastically, including surviving on nothing but chicken soup for a year, eating nutrient dense foods, raw milk, of course organic, vitamins, minerals, herbal supplements, and everything else with no real effect.

Insomnia has also been a big problem for at least the last 10 years. I take Ambien which does technically get me to sleep, but the sleep does not feel deep or effective. I do lots of exercise including jogging, swimming, and light weights . I feel plenty tired but never sleepy.

Working is out of the question as I can barely use my hands for anything, cannot use a computer, tablet, phone, etc. I cannot even really cook or do almost any housework either. I've been so long in this condition that I've hardly logged any work credits and cannot even collect Social Security so I'm in a bad way financially, but that's really the least of my concerns.

It's really depressing and frustrating to have to wake up every day and be in constant pain, to be unable to work or contribute in any meaningful way, to try and do and eat the right things but never experience any relief And to never get any answers or feel any sense of going forward. I know there are many others who can relate to this.

My doctor has me on the usual medications for fibromyalgia: Lyrica, Cymbalta. I took gabapentin for many years as well with no effect. The Lyrica can sometimes give me some relief, but only if I take double the dosage that my doctor prescribes, and I end up running out and not being able to refill.

I'm going to research medical marijuana but my understanding is that isn't covered by any insurance and I don't see how I'm going to be able to afford it.

Anyway, thanks for listening.

Carl
carljr17 is offline  
Old 09-12-2016, 04:49 PM #2
njdev95av's Avatar
njdev95av njdev95av is offline
New Member (Say Hi)
Registered Member
 
Join Date: 2016
Posts: 8
njdev95av is on a distinguished road
njdev95av njdev95av is offline
New Member (Say Hi)
Registered Member
njdev95av's Avatar
Join Date: 2016
City: Flemington
State: NJ
Country: US
Diagnosed: 04/2000
Interest: I have Fibromyalgia, chronic pain, or chronic fatigue.
Posts: 8
njdev95av is on a distinguished road
Default Re: Fibromyalgia for over 26 years?

I know what its like and only those of us who have been through it can.

One thing to watch out for is over-medicating. I never knew how much damage was being done by the meds prescribed to help my symptoms until I found a way to come off them. I am now on only one medication and feel better than I can ever remember feeling in my adult life. I do take some essential oils internally as well as several supplements but they are working better for me than the medication ever did.

It is also extremely important to find the right doctors; if you can not question your doctor about the meds he/she prescribes and discuss alternative treatments then they are not the right doctors. I was diagnosed with fibro 16 years ago and only this past year i feel like i finally have a path that is working for me, and everyone in my life can tell the difference. If you are having serious GI issue, you might want to have a gastroenterologist test for microscopic colitis. it is a fairly rare form that can have all the symptoms of auto-immune, UC or crohn's but won't show up on any of the tests. Your GE needs to be looking for it specifically. there are two kinds, I have lymphositic, the other is collagenous. they can also be a cause for vitamin and mineral absorption problems.

One last suggestion is taking a high potency chlorophyll supplement, I use Vitamineral Green. It has a lot of vitamins and minerals and the days I miss taking it I really notice a drop in mood, energy level, and an increase in my pain and head aches.

Hang in there. Surround yourself with people who support you both emotionally and physically and know that you are not alone. If you ever want more info on the oils and supplements I use just let me know.
njdev95av is offline  
Old 09-12-2016, 10:50 PM #3
Shyest's Avatar
Shyest Shyest is offline
New Member (Say Hi)
Registered Member
 
Join Date: 2016
Posts: 17
Shyest is on a distinguished road
Shyest Shyest is offline
New Member (Say Hi)
Registered Member
Shyest's Avatar
Join Date: 2016
City: Philly
State: PA
Country: US
Diagnosed: 01/2014
Interest: I have Fibromyalgia, chronic pain, or chronic fatigue.
Posts: 17
Shyest is on a distinguished road
Default Re: Fibromyalgia for over 26 years?

That's tough, it sounds like you have a nerve issue in your hands more specific then fibro - did they ever do a nerve conduction test for you I wonder? With that said I am not a doctor. I don't associate a "true" neuropathy with fibromyalgia which I see as a more generalized affliction, others may view it differently.

SSDI is the form of benefits that requires work credits to receive. In general people over 30 have to have 5 years of full time work credits I think, anyone 21 and under can be elligable based on their parents credits I think, most of us don't fit in that category though. In your 20s you don't need as many credits, it scales as you age and tops off at around 29-30 I think.

SSI does not require credits, but it does require one to be desperate money wise, though you can have a house/groceries paid by family- you would just receive less each month then someone living on their own. SSI has very strict limitations on what you can own asset wise (no stock, no savings over 2000 as a single person- 3000 if married) - you can own a car and a house and some possessions I guess. You can't really receive gifts, you are allowed to do some work as long as it's very little, but your check will be reduced for the month for these things (gifts 1:1, work is a specific formula of reduction in your monthly check). It's certainly not glamerous.

SS almost everyone is elligable after a certain age

The top 2 are disability dependant, so you have to be able to prove you are disabled. From what you have wrote here you could based on your health qualify for SSI, but I don't know if you meet the other requirements. It takes approximately 2 years to get through the process right now (2016). You have to apply, wait for a response- most people are denied at this attempt. You then have 60 days to appeal, you go through the second submission for re-review, more people are denied here. Finally you get to go before a judge and plead your case, many people hire a lawyer (who is not paid outright, they receive a portion of your "back pay" or all of it), this is where most people who are denied are successful, but not everyone is. You can apply again after this, but I don't know how long you have to wait. Depending on your situation this might all be worth it to you.

If at the end of your receiving disability you receive "Back pay" you have 9 months to spend anything above the 2000$ asset limit (as an SSI recipient or they cut your benefits). If you have a lawyer they do take some or most of it. But, many people take this "excess" money if they get any and spend what they need, and place excess in a "disability trust" which are availible in a few states- including to those living not in that state. A disability trust is a trust that basically any money or assets related to the trust can only go to your disability needs, it isn't perfect but it does let you keep the money. Each state has somewhat different rules.
Shyest is offline  
Old 09-14-2016, 09:28 AM #4
carljr17's Avatar
carljr17 carljr17 is offline
New Member (Say Hi)
Registered Member
 
Join Date: 2016
Posts: 6
carljr17 is on a distinguished road
carljr17 carljr17 is offline
New Member (Say Hi)
Registered Member
carljr17's Avatar
Join Date: 2016
City: clinton township
State: michigan
Country: US
Interest: I have Fibromyalgia, chronic pain, or chronic fatigue.
Posts: 6
carljr17 is on a distinguished road
Default Re: Fibromyalgia for over 26 years?

Thank you for replying!

I looked up microscopic colitis, but that does not seem to be much of an overlap symptoms. While I do have severe G.I. issues, diarrhea is not frequently one of them.

I do agree that long-term use of these medications is extremely harmful. I have good reason to suspect that my long-term use of Ambien and other sleeping medications are responsible for some of my G.I. issues.

I have put the chlorophyll supplement on my list, but right now I'm not in the financial situation where I can experiment with supplements. If you wouldn't mind letting me know which oils you use (for future reference), I would appreciate it.

Again, all replies are greatly appreciated. Thank you!
carljr17 is offline  
Old 09-14-2016, 09:33 AM #5
carljr17's Avatar
carljr17 carljr17 is offline
New Member (Say Hi)
Registered Member
 
Join Date: 2016
Posts: 6
carljr17 is on a distinguished road
carljr17 carljr17 is offline
New Member (Say Hi)
Registered Member
carljr17's Avatar
Join Date: 2016
City: clinton township
State: michigan
Country: US
Interest: I have Fibromyalgia, chronic pain, or chronic fatigue.
Posts: 6
carljr17 is on a distinguished road
Default Re: Fibromyalgia for over 26 years?

It does seem to have the neurological component, but apparently it is nothing that can be tested for or understood. I've had numerous nerve conduction velocity tests over my life and there is clearly nothing wrong in that regard. I've heard that one of the theories about fibromyalgia is that is related to how messages are sent from the brain to the nerves. My guess is that something is being mixed up there, and this is causing the electric shocks and other symptoms.

Thank you for your overview of Social Security disability. I'm on my fourth time applying, and fully expect to be denied. I've got a lawyer lined up for the appeals process and hopefully this will eventually lead to me getting it, but my understanding is that it will be for fairly meager sum (under $800 a month, barely enough to pay rent).

Thanks again for the reply.
carljr17 is offline  
Old 09-15-2016, 08:50 AM #6
njdev95av's Avatar
njdev95av njdev95av is offline
New Member (Say Hi)
Registered Member
 
Join Date: 2016
Posts: 8
njdev95av is on a distinguished road
njdev95av njdev95av is offline
New Member (Say Hi)
Registered Member
njdev95av's Avatar
Join Date: 2016
City: Flemington
State: NJ
Country: US
Diagnosed: 04/2000
Interest: I have Fibromyalgia, chronic pain, or chronic fatigue.
Posts: 8
njdev95av is on a distinguished road
Default Re: Fibromyalgia for over 26 years?

Quote:
Originally Posted by carljr17 View Post
Thank you for replying!

I looked up microscopic colitis, but that does not seem to be much of an overlap symptoms. While I do have severe G.I. issues, diarrhea is not frequently one of them.

I do agree that long-term use of these medications is extremely harmful. I have good reason to suspect that my long-term use of Ambien and other sleeping medications are responsible for some of my G.I. issues.

I have put the chlorophyll supplement on my list, but right now I'm not in the financial situation where I can experiment with supplements. If you wouldn't mind letting me know which oils you use (for future reference), I would appreciate it.

Again, all replies are greatly appreciated. Thank you!
I rarely have diarrhea which is one of the reasons I questioned my diagnosis when it was first given, but my GI doc said that it can manifest in any digestive problems and as auto-immune symptoms. MC can also be brought on by chemical interactions of medications and my doc is pretty sure that mine started or was made much worse by the combinations of pain killers, muscle relaxers and antidepressants/antianxiety drugs especially cymbals class drugs(all the ones they want to put you on for fibro). he told me there is a good amount of patient reported GI side effects with the fibro drugs that never make it into the documentation because they are considered anecdotal evidence and not based on scientific study. so basically we are the lab rats and until enough people have severe enough problems the drug company does not have to disclose the possible link between their drugs and our GI problems. sorry for the rant but it makes me disgusted.

the oils that I use are Frankincense, Ginger, Peppermint, Clove, Helichrysum, Lemon, Oregano, Rosemary, Thyme and Copaiba internally and Lavender, geranium and cedar wood diffused and peppermint and wintergreen topically for pain and clove and cypress topically for circulation issues. the oils I use topically i dilute in a carrier oil, usually coconut or cold pressed olive oil. they are not cheap but it is very important to use a high purity oil or you will probably end up with chemical synthetics. the essential oils industry is considered a fragrance and cosmetics industry so it is not strictly regulated by the FDA, only 8% of an oil has to be pure to carry a label saying Pure Essential Oil. I use a specific brand but they are more expensive than some of the others so it is really up to each person to research the brands they use. almost all EOs available in a retail store are not pure. test the oils buy putting a small drop on your skin (i use my arm) for sensitivities before using them widespread just in case.

the oils have helped me but to say they have cured me would be a gross overstatement. i still have my good days and bad days and every once in a while those days were i want to throw myself into oncoming traffic, but overall i have been better with them. Part of the "better with them" might just be a lack of side effects from coming off my meds, i was on 9.
I am also fighting for disability, have been waiting for a hearing for over 2 years in NJ. I ended up having to move back in with my parents after i could no longer work and couldn't afford my apartment. fortunately for me i have a wonderfully supportive family. the life plan was not to be living with my parents at 32 and needing them to help pay for my treatment but i still hold out hope that one day i will figure this out and when they need me to care for them i will be able to return the favor.
njdev95av is offline  
Closed Thread

Tags
back, bed, brain, cymbalta, diet, emg, exercise, fibromyalgia, gabapentin, ibs, insurance, lyrica, marijuana, medical marijuana, mri, pain, problem, relief, research, sleep, social security, symptoms, test, tingling, understanding, wanted, wrist


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Similar Threads
Thread Thread Starter Forum Replies Last Post
19 years old with Fibromyalgia Jordan General Discussions About Fibromyalgia 27 07-03-2016 11:13 AM
I've had Fibromyalgia for 11 years fuengirola25 Welcome New Members - Say Hello 3 05-22-2014 02:35 PM
Hello Everyone! I Am New To This Forum Yet Have Had Fibromyalgia For 31 Years Now! Syndi Welcome New Members - Say Hello 4 05-26-2013 01:38 PM
Had fibromyalgia for six years norleanslady General Discussions About Fibromyalgia 3 02-11-2013 10:07 PM
Diagnosed with Fibromyalgia 16 years ago sukilou General Discussions About Fibromyalgia 0 01-12-2009 04:03 PM

 
All times are GMT -5. The time now is 03:24 AM.
Copyright © 2017