View Full Version : Fibromyalgia-I KNEW IT!! Please give me some feedback!


kbomb
10-30-10, 11:43 AM
I have been in pain, mentally and physically for the last 10 years. Was dx'd with adult adhd in May this year and after starting on Adderall XR, finally felt mentally content and happy.

Then, wouldnt u know it, my body started literally falling apart.
Was treated for chronic pain in my lower back due to past injury, tried a zillion different meds for symtoms, voltaren, ultram, amitryptilene, flexeril, trazadone, and the only one that works for me: norco

the pain, started moving from my lower back to upper middle back, then to left shoulder, and im talking pretty intense pain.

had MRI, did phys therapy, and going to see a pain mgmt doc in few weeks.

then few weeks ago, i started having more symptoms....headaches, which i never ever get, balance issues, extreme morning stiffness, leg cramps and sinus problems.
My existing back pain was almost debilitating ESPECIALLY after I work out or do yoga or any intense physical mvmt.
Also experienced alot of tingling, zinging sensations across my upper back and arms and also burning.
Not done yet!
Then came the sinus issues, lowered immune system (had bronchitis and the flu back to back), sensitivity to loud noises and blurry vision!
Everytime I researched a symptom, the same result: Fibromyalgia

and my dr agrees. He is starting me on small dose of neurontin and wants to see what the pain mgt doctor says.

Is anyone on Adderall and Neurontin? I know its safe together, just wondering if the neurontin takes away from Adderalls benefits at all.
and do u really gain much weight on it??

Also, I have Interstitial Cystitis, and I read that they think there may be a link between this disease and FMS.....any thoughts?

I know there is no known specific cause for fibromyalgia, but Ive been doing some research, and am interested in other peoples opinions on this......I believe my dx may be the result of chronic stress, and I have a history of depression, Gen Anxiety disorder with Panic, and of course ADHD....

Would love to hear from fellow ADD/FMS patients!!!:):):)

Imnapl
10-30-10, 12:50 PM
Kbomb, I hope your doctor is referring you to a specialist, preferably a rheumatologist.

kbomb
10-30-10, 01:58 PM
thx, I will ask for a referral.
Another thing I left out of that post was that I recently discontinued the depo-provera shot and am thinking that some of my symptoms may be related to that.

If anyone has info on that or any of the other meds Im taking, whether they mix well, side effects, etc..... please let me know.

Adderall XR 30mg
Ativan 1mg as needed for panic attacks
Norco 5/325mg as needed for pain
Neurontin 100mg at bedtime (starting at very low dose)
Trazodone 100mg at bedtime

vit/supp
Multivitamin
fish oil
calcium with d
magnesium
l-theanine (sometimes)

also, im pleasantly surprised that my insurance is going to pay for a tens machine.....im borrowing a friends right now and it is a life saver!!!:)

kbomb
11-04-10, 10:56 AM
thought I would give an update on my situation and what is working, and not working for me......
Been on the neurontin for 5 nights, Im not sure what to think of it yet. Some mornings Ive had terrible back pain, and some mornings like today, I FEEL GREAT!
It is hard to say, whether the neurontin is causing either. Although, I wil say that I have not had many other side effects aside from sinus issues in the morning, which could be anything, FMS, allergies, dust, etc... and one more thing, I have felt some of my ADHD symptoms returning since staring neurontin. Wonder if it decreases the effectiveness of my adderall?

One thing I will say with certainty, is that the combo of neurontin and trazodone at bedtime is a GOD SEND! I feel EXTREMELY well-rested in the morning, although still having the morning pain/stiffness . the pain level varies for me.

I feel that this inconsistancy is one of the most trying elements of this illness (FMS)
Its so hard to determine what is working and what isnt, as I have added a few supplements, new meds, lifestyle changes, eating habits, etc...
I have started a journal to document what Im taking, doing, eating everyday, in hope that I can figure out what works for me.

Recent changes I have made are:
Magnesium Citrate 400-600mg a day
Neurontin at bed 100mg (adding another dose during the day starting tommorow)
Kangen water
also experimenting with my diet, im going to try to cut way down on acidic foods, which I am not supposed to eat anyway due to my Interstitial Cystitis

Anyways, I truly feel that either one of these additions, or a combination, is definately working for me. I feel well-rested, anxiety had decreased significanty, and pain level is at least managable most days.

Another possibillity is that body may be FINALLY starting to rid itself of that poisonous depo-provera! Not sure though. Its going on 3 months since I was due to get a shot. Still no mensus, aside from light spotting for one week last month. My
breasts are still terribly sore and huge. Mood swings in full effect, lol. So, Im thinking maybe mother nature will visit soon.
Speaking of depo-provera, In researching possible FMS causes , I found an interesting tid bit .............."Depo-Provera exacerbates glutamate excitotoxicity, which may render users more vulnerable to neurogenerative insult-a greater likelihood of such diseases as FMS." --Medic8.com
I also have also been reading hundreds of threads on a depo-provera forum.
There is soooooooooooooo many women complaining of side-effects consistent with FMS, during and especially post depo. Hmmmmmmmmmmmmmmm..........


Another risk factor I found extremely interesting is having Type A personality traits.
Has anyone else heard this? It makes complete sense to me, as I have felt all along that chronic stress and general over-achieving type/perfectionist type behavior is in part to blame for triggering my FMS. (along with the depo-shot, chronic back pain after injury,miscarriage, and life long Anxiety and depression--this is just my own personal beliefs)

Another one that suprised me is a link between yeast and FMS. Is anyone taking any supplements for this?

Here is a few more risk factors I ran across---This info is not proven, just different ideas I stumbled on and found interesting:
chronic pain
lupus
osteoarthritis
Post-traumatic stress disorder
IBS (irritable bowel)
thyroid disease
History of mood disorders
sinus problems
ear infections
miscarriage
Mono
ovarian cysts
female gender
physical injury/trauma
severe/chronic stress
Type A personality

also have heard of possible links between Interstitial Cystitis, and ADD/ADHD
Please feel free to add to my list, I think alot of people would find it helpful, even though it should be noted, that there are no proven "causes" at least not that I have found.
FEEDBACK WELCOME!!!

overmedicated
11-12-10, 09:15 PM
I was diagnosed with Fibromyalgia in '09. I currently take adderall, but haven't taken the two together. I was experiencing electric like pains in hands, feet, and strangely enough, my face. All tests (including EMG) showed nothing that would explain this pain. They prescribed me neurontin, which helped, for a while. Your body will adapt quickly, and you will prob need to up the dose.
But then a miracle happened. I came across some research that claimed that your mind can manifest illnesses in your body, or make you well. It relates to "focused intent." "The Secret" is a good book to explain the concept. Because I was constantly focused on a pain in my neck, the symptoms increased, eventually resulting in what docs call Fibromyalgia. I quit the Neurontin and decided to pay these phantom pains no mind. WITHIN 2 WEEKS, ALL SIGNS OF FIBROMYALGIA VANISHED! I literally cured an incurable condition with my mind. I realize that this sounds ridiculous, but it really happened.
I certainly don't mean to diminish the pain you're going through. Just sharing my experience. Search Amazon for books like "Heal Yourself Heal Others." Best wishes!

Mary
11-16-10, 03:31 PM
Kbomb.. I agree with Imnapl... please get a referall to a rheumatologist....

overmedicated... while thankfully in your case the mind over matter helped you. It isn't always the case. I've tried mind over matter many times... and while I feel good a lot of the time and I do things I put my mind to ... (ie: housework etc..) eventually I end up paying for it. My body gets overtired and shuts down. I get cold and can't get warm... I end up having to lay down and wrap in 3 or 4 blankets. The rheumatologist told me that I'd never be able to work outside the home because of this.

To the rest of our readers, as I mentioned... each person is different, be aware of your bodies limitations. Listen to your doctors advice. If you can take the meds for Fibromyalgia that's wonderful... I can't because of high blood pressure. Work out a routine that you and your body can handle. Lack of vitamin D... makes the symptoms worse (at least in my case) ask your doctor before trying anything.

The same meds for adhd have been found to help symptoms of fibromyalgia as it is caused by the same lack of chemicals in the brain. As before...consult your doctor.

Fresh air and sunshine in moderation help... but if you take a med that tells you not to be in direct sunlight for extended periods of time... then ask your doctor about being able to increase your D supplements.

Mary
11-16-10, 03:32 PM
Another thing is watch your gluten intake and especially your MSG's... it effects fibromyalgia patients as well as adhd'ers and those with autism and aspergers.

Marspider
11-16-10, 08:16 PM
That's interesting. I had one depo provera shot in 1998 and I wasn't aware that it was linked to all of these issues.
Never again, I had my period for 3 months till it went out of my system and now I think about it, my health has been screwed up since then. It was at the university clinic.
I'm really angry that the doctor practically forced me to take it. Every single time I went to that place, it was have you tried it. It's good for contraception bla bla and I was barely sexually active. And on until I gave in.
None of my other friends were badgered in the same way

Mary
11-18-10, 05:22 PM
That's interesting. I had one depo provera shot in 1998 and I wasn't aware that it was linked to all of these issues.
Never again, I had my period for 3 months till it went out of my system and now I think about it, my health has been screwed up since then. It was at the university clinic.
I'm really angry that the doctor practically forced me to take it. Every single time I went to that place, it was have you tried it. It's good for contraception bla bla and I was barely sexually active. And on until I gave in.
None of my other friends were badgered in the same way


Have you thought about reporting the doctor to the AMA?

kbomb
11-29-10, 07:42 PM
Update******** recently seen my psychiatrist and now have my Anxiety under control. HAS DONE WONDERS FOR MY FIBRO PAIN! the stress was literally crippling me. (Im very type A personality, and dx: Gen Anxiety with Panic)
If anyone wants to know more, I posted a much longer thread under medications for coexisting illness/ anti-anxiety.
I feel so much better physically, there is still pain, but not even close to what it was....and im a much nicer person to be around. Thank you lord!

k31kozumi
11-29-10, 09:56 PM
have you checked your vitamin d levels? that saved me!

Mary
11-30-10, 11:15 PM
have you checked your vitamin d levels? that saved me!

Also get your thyroid checked periodically. Symptoms mirror each other.. same as they do with ADD.

Marspider
12-01-10, 05:37 PM
I wonder if it's really anxiety causing the fibromyalgia pain.
I'm anxious, I have generalised anxiety actually and I got prescribed Lyrica (pregabalin) which is also used for fibromyalgia. And it's really helped my anxiety and some random body weirdness. I used to have lots of muscle twitches and difficulty swallowing, and aches which have gone.
Pregabalin increases GABA. I guess if low GABA levels can cause anxiety and some fibromyalgia symptoms, getting a GABAenergic drug will reduce these symptoms but then the conclusion is that anxiety caused the pain symptoms when both were just symptoms of low GABA levels.
I seem to be rambling sorry.

Update******** recently seen my psychiatrist and now have my Anxiety under control. HAS DONE WONDERS FOR MY FIBRO PAIN! the stress was literally crippling me. (Im very type A personality, and dx: Gen Anxiety with Panic)
If anyone wants to know more, I posted a much longer thread under medications for coexisting illness/ anti-anxiety.
I feel so much better physically, there is still pain, but not even close to what it was....and im a much nicer person to be around. Thank you lord!

Imnapl
12-01-10, 09:42 PM
Marspider, my husband is the least anxious person I know, but he has leg pain from bad knees that seriously disturbs his sleep. While he waits for a knee replacement, the doctor tried Lyrica and it works for him. My husband is thrilled to be able to sleep again.

kbomb
12-11-10, 11:34 AM
Well ladies, I think i spoke to soon.....I do feel better in the sense that I am more relaxed on the new med, thus less tension, and less fibro pain.
But this is certainly no miracle, this last week I started feeling terrible again.
I have been staying up way to late and had a few drinks though, plus holiday eating habits, Ya know? I have had my thyroid checked, all good there. Have not been checked for vitamin D levels and I really want to. Going to start getting injections in my back and shoulder area in January from pain doc......