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Kelvin

New member
Joined
Jan 23, 2017
Messages
6
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DX FIBRO
Diagnosis
03/2017
Country
US
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OK
Hi, new here.

I've been dealing with chronic pain for several years now, being shuffled from doctor to doctor, trying to figure out what's wrong.

I've been on psych disability for 6 or 7 years for severe depression, anxiety, and ptsd. I also suffered from chronic migraine. 2 years ago, I had a stroke of luck. After a suicide attempt put me in the hospital, I was given Welbutrin which has helped immensely with both my depression and the migraines! It is a huge relief to finally be able to sleep without a head full of suicidal thoughts.

So with my mental health relatively stabilized, I started trying to get ready to go back to work and possibly school. I was walking a lot and I was also doing a lot of typing. Then I tried to run, and that messed both my knees up with patellofemoral syndrome (4 months and still not healed.) While I was typing, I noticed pain in my hands which gradually got worse and worse. Finally it got bad enough where I could barely use them. I thought it was just some tendinitis from bad typing posture or something, so I did some physical therapy for that and found no improvement.

So over the last 2 years, the pain has spread. I have it in my hands, arms, feet, neck, legs and sometimes my jaws. It depends on my activity, for example if I talk a lot or laugh a lot with family, my jaw will ache for a few days. Typing this is killing my hands. I can't even play board games because moving the pieces, reaching for cards, etc. hurts too much.

I've seen a carpal tunnel specialist, hand surgeon and orthopedic surgeon. I've been doing physical therapy for 4 months and there hasn't been any improvement. I tried literally sitting still, resting, not using my hands for 6 weeks. We thought maybe it was a side effect of the wellbutrin, since that was when the pain started, but I tried 6 weeks without wellbutrin and that didn't get any results (except for my headaches and depression coming back.) I've tried steroid injections which didn't help. Hand surgeon said there's nothing she can do surgically?:confused:

My EMG showed mild carpal tunnel, but only in the left hand. The pain I feel is equal in both sides of my body. It can be stabbing or aching/throbbing, like right now from typing it feels like my hands are being crushed in a vice, there is burning pain radiating up the arms to the elbows, I'm getting sharp pains in my biceps and my neck is aching.

To give a reference point for my pain, I had all my wisdom teeth cut out, opted out of painkillers, sneezed and got a dry socket which I would rank at a 6/10. Pain in my arms sometimes gets up to an 8, usually worst at night, keeping me awake. 10 would be some of the migraines I used to have before Wellbutrin.

A lot of my symptoms seem to match up with fibromyalgia, from what I've read. I have IBS, restless leg syndrome, panic attacks. I have been getting muscle spasms more frequently in my arms, hands and legs. I have extreme food sensitivities -- I don't eat refined sugar, artificial sweeteners, caffeine, or most processed foods. They give me headaches and chest pains. So do alcohol and marijuana for some reason... Basically I haven't ingested anything fun or tasty for 8 years now. To be honest, I mostly just eat plain cheerios, broccoli, apples and nuts. (Which have become tastier to me over the years, since I never eat any junk food to compare them to.) The fortunate byproduct of this limited diet is a healthy weight - 5'8" 125 lbs.

Today I saw a pain management doctor who prescribed methocarbamol and nabumetone. He also wants to do an MRI on my neck. I haven't tried the new pills yet because I'm always very paranoid of new meds, I've had some bad reactions in the past (and then that leads to a panic attack and the badness snowballs.) I'll probably give them a try this weekend when I have someone to observe me.

I guess my questions are:

Does it sound like fibro to you?

How do I discuss the possibility of fibro with a doctor and what tests can be done to identify it?

Are those medications something that can help long term? Have any of you had luck with those kinds of meds?

I'm not just trying to temporarily relieve the pain (although that would be nice); my goal is to be able to start working again. The good news is, despite the chronic pain and not being able to do anything I like, I've somehow managed to keep a positive outlook and stay optimistic... Wellbutrin's a hell of a drug. :shock:
 

Sagey

Senior member
Joined
Nov 20, 2014
Messages
209
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Diagnosis
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Kevin,
I'm glad you found a medication that works for you, that's not an easy task.

It sounds like Fibro because u seem to have a lot of the symptoms.

You need to see a Rheumatologist or specialist that can do some testing to rule out other disorders
.It does sound like u are starting to do this.

There are alot of diseases that mimick Fibro and you want to make sure u get the right diagnosis, so you're treated properly.

Wish u luck

Sagey
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
It does sound like fibro with typical onset and the types of pain you describe...Sagey is right either your own doctor or a rheumy needs to confirm fibro...a specialist is best as they will do more tests and have more experience..although sometimes i know general practitioners do diagnose.

Then there may well be a variety of trwatments that could help from water therapy to pain killers or anti epileptics used or nerve pain Like you i hate taking meds and have reluctantly given in lately to stronger things in desperation...but for years i limited my activity and managed without medication.

I soo much preferred when that worked al beit my life was pretty limited but now i am housebound and trying to find a way back to join the human race from time to time.

take care of yourself..this is such a hard illness to get a handle on not just physically but emotionally. You have already been battling your demons and done so well to come this far...i wish you the very best of luck and please come here any time for support and to share.

Its not uncommon for trauma as in ptsd or long term stress to be the cause of fibro in many people...me included.
 

Kelvin

New member
Joined
Jan 23, 2017
Messages
6
Reason
DX FIBRO
Diagnosis
03/2017
Country
US
State
OK
Thanks for the replies and the kind words, it means a lot to me. I really appreciate it.

What other types of medical problems typically mimic fibro? I'm guessing that's part of why he ordered the MRI.

I guess I will probably try to contact a rheumatologist on my own as soon as I can, rather than wait for my next appointment with the pain management doctor. Sometimes it takes forever for them to give you a referral. I know my general practitioner ordered some blood work which came back negative, but can't remember exactly what all I was tested for. I think rheumatoid arthritis and auto immune disorder or something like that.

I tried the two medications, and they didn't really do much for the pain. I'd really prefer not to take opiates if I can avoid it. I read good things about CBD oil, but I'm kind of hesitant to ask a doctor about it since it is a "weed" thing. I'm just so desperate at this point.

I've been isolated from society for almost 8 years now too and I want to get back to life so bad. My twenties just got flushed down the drain. It's too bad there aren't many jobs where you don't have to use your arms or legs...
 

Forgetmenot

Legendary member
Joined
Oct 6, 2014
Messages
1,549
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
There's no tests to prove you have fibro sadly,just like there no test to prove you have migraines.
Dr tend to rule everything else out first.
Why don't u ring your dr and ask if u sound like u have fibro.it sounds like you do.we tend to get pain everywhere.and it can move,u may find for months u have it in your hand ,just to wake up one day to find your hands are fine.i take gabbipintin and tramadol.they help me live a fairly normal life.but you will have to learn to adjust ,and for most of us live on pills.
I may die a few year before I should.but I can't spend my live in bed.x
 

Kelvin

New member
Joined
Jan 23, 2017
Messages
6
Reason
DX FIBRO
Diagnosis
03/2017
Country
US
State
OK
It's good to hear that there are some meds working for you. Did it take a long time for you to feel any improvement from those, or was it pretty quick?
 

Forgetmenot

Legendary member
Joined
Oct 6, 2014
Messages
1,549
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
If your asking me,hehe yes it was pretty fast.sure I was sleepy for a while.and they started me at 100 mg 3 times a day.im now on 600mg a day.
And two 50mg tramadol morning and night.
 

Kelvin

New member
Joined
Jan 23, 2017
Messages
6
Reason
DX FIBRO
Diagnosis
03/2017
Country
US
State
OK
Just got diagnosed with fibro and he prescribed 100mg gabapentin x3 daily. This is the first day of taking it -- I feel a bit fuzzy and my head hurts some but so far my arms do feel a little better than normal so fingers are crossed that this will work. Did you have any negative side effects when you started and did they get better with time? Are you able to work with these medications?
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
ive just started on gabby too 100mg..we can go through this together as i was pretty sure from your post you had fibro...its so sad you tried steroid shots and all sorts so unneccesarily. I didnt go down this route as mt dad has ME/CFS so i knew what i had was almost the same. except he did nt get it quite as bad as me..his pain is well controlled with much less medication.

i was offered steroid shot in my shoulder and refused due to the risk and knew i had no reason to suddenly have pain all over and that giving me steroids in just one place was not for me..i didnt believe it when my specialist said i had a frozen shoulder and my xrays and ultrasound said only normal wear and tear for my age. I was right after a year of the pain spreading all over i was told fibro.

I think most people get side affects some ease in time some dont. We are all so different. Good luck
 

vickythecat

Senior member
Joined
Jan 5, 2017
Messages
366
Reason
DX FIBRO
Diagnosis
01/2013
Country
EU
State
Earth
A diagnosis is a great step towards feeling at your best. Fibro is a very complicated, distressing illness, but at least with a definitive diagnosis, you can try out different meds and therapies, know what is wrong. And share your stories here with fellow fibro-buddies :) (have to stay positive no matter what)

Gabapentin - I gave it a try twice, each after my failed neck surgeries. It gave me a lot of tremors and this weird feeling I did not like. I did have to take a large dose in order to feel its pain-free effects though. I like to be in control and with that high dosage it felt like I was in another wavelength (I also suffer from a personality disorder, depression and PTSD). But I am also a very sensitive person, a female with weird hormones, very petite etc. So it could be the right treatment for you. You really have to give it a decent try of at least 3 months, if you can.

For me tramadol (slow release 100 mg) is the only medication that really makes a difference. I have been on it for 4 years now. But it is not for everyone, it can be addictive for many, or its side effects a nightmare for some.

Physical pain combined with mental illness is one heck of a ride. We really have to stay ahead of everything, be experts in listening to our bodies and accepting our new realities. It is yet another hurdle - but you seem to have the right approach = having a positive attitude is key. Talk about it with loved ones/therapists, take good care of your mind and your body, and one a bad day, allow yourself to have that bad day making sure not to lose hope for better days.
 

Kelvin

New member
Joined
Jan 23, 2017
Messages
6
Reason
DX FIBRO
Diagnosis
03/2017
Country
US
State
OK
ive just started on gabby too 100mg..we can go through this together as i was pretty sure from your post you had fibro...its so sad you tried steroid shots and all sorts so unneccesarily.

That's cool, let me know how it goes for you. For me, I told the doc I was doing alright on it so far so he upped the dose to 200 mg. The only side effect I've noticed so far is that it affects my taste buds/mouth sensitivity where spicy foods are painful and most foods just taste kind of bland. I was planning to change my diet anyway now that I know I have fibro. This month I am weaning off gluten and dairy.

A diagnosis is a great step towards feeling at your best. Fibro is a very complicated, distressing illness, but at least with a definitive diagnosis, you can try out different meds and therapies, know what is wrong. And share your stories here with fellow fibro-buddies :) (have to stay positive no matter what)

Gabapentin - I gave it a try twice, each after my failed neck surgeries. It gave me a lot of tremors and this weird feeling I did not like. I did have to take a large dose in order to feel its pain-free effects though. I like to be in control and with that high dosage it felt like I was in another wavelength (I also suffer from a personality disorder, depression and PTSD). But I am also a very sensitive person, a female with weird hormones, very petite etc. So it could be the right treatment for you. You really have to give it a decent try of at least 3 months, if you can.

For me tramadol (slow release 100 mg) is the only medication that really makes a difference. I have been on it for 4 years now. But it is not for everyone, it can be addictive for many, or its side effects a nightmare for some.

Physical pain combined with mental illness is one heck of a ride. We really have to stay ahead of everything, be experts in listening to our bodies and accepting our new realities. It is yet another hurdle - but you seem to have the right approach = having a positive attitude is key. Talk about it with loved ones/therapists, take good care of your mind and your body, and one a bad day, allow yourself to have that bad day making sure not to lose hope for better days.

Yeah in a way it was a relief to finally get that diagnosis, but then a few days later it started to sink in that...oh, I have this forever... The more research I do, the more my symptoms make sense; for example, a lot of the stuff they say to cut out of your diet were things I'd already figured out on my own.

I was actually on Tramadol a long time ago for migraines then I got off it. Personally, I never abused it, even though I have a history of opiate abuse. I remember my excuse for doing all the drugs I did when I was younger (up to and including heroin) was back pain/headaches. However, after going through some extremely painful withdrawals, I decided I'm definitely not going down that route again. I tell all my doctors I don't want opiates but I think the Tramadol was weak enough that I never really felt the urge to abuse it, so it could be an option. Although, if I can get by on just increasing the gabapentin, that would be better. Right now, my life mission is to just get healthy enough to serve some useful function in society so I can feel good about myself.
 

Zolly

Member
Joined
Apr 28, 2017
Messages
11
Reason
DX FIBRO
Diagnosis
01/2017
Country
UK
State
Cornwall
Hi :) I was taking Gabapentin for a while but I had to stop I seemed to have some pretty nasty side effects and it didn't even touch my pain :( I do hope that it works well for you! :)
 
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