View Full Version : Is this section active?


ADDCindy
04-21-14, 08:54 PM
It looks like most of the posts in this section are older. Are there any other forum members who have both fibromyalgia and ADD who'd like to get this section more active again?

I was 34 when I was Dx with fibromyalgia, although I'd had it most of my life. A friend who was visiting recognized my ADD and I recognized his fibromyalgia, and not long after that, at the age of 42, I found a psychiatrist who first helped me find a pain management doctor, then treated my ADD. She believes me when I tell her that Dexedrine helps the pain from fibro, as well as the brain fog/ADD.

My ADD meds help the pain a LOT, and I've known other people with ADD and fibro who say the same thing. I can't take any of the SSRIs or Neurontin, but opioid pain meds and stimulant ADD meds have worked well for years, with only minor dose increases. Anything that helps reduce pain helps my energy, and vice versa. I had a really good article about the relationship of Substance P and norepinephrine, but gave it to one of my PainDocs and he disappeared shortly thereafter.

So... am I talking to my tribe, or am I talking to myself? :)

Abi
04-22-14, 07:48 AM
Fortune. Lovely lady. :)

Lunacie
04-22-14, 11:07 AM
I began taking Omega 3 (fish oil supplement) about 11 years ago,

the same time my divorce was finalized.

So it's hard to say which one actually helped with my Fibro, maybe both did?


The fibro still knocks me on my butt every so often, but not every single day like before.

Allergies definitely make the fibro worse, this is allergy season big time here

and I just slept 12 hours and could still take a nap now. ;)


I do take an SSRI (sertraline) daily, but have to be very cautious with pain meds due to the allergies.

It's very unpleasant vomiting following surgery or with a broken bone in the upper arm. :(

Abi
04-22-14, 11:26 AM
Luna has fibro?

How come I didn't know this?

Lunacie
04-22-14, 12:47 PM
Luna has fibro?

How come I didn't know this?

Because I haven't talked it about it very often?

It hasn't been a big problem in the last few year like it used to be.

Besides ... you don't know everything. ;)

fracturedstory
04-27-14, 11:56 PM
I just had to chuckle a bit at the title. Asking whether this part of the forum has been active and it's where people with CFS go to...

Anyway, I still think have have a residual CFS because I tend to expend my energy very quickly and often end up exhausted.

Piper30
05-23-14, 01:42 AM
It looks like most of the posts in this section are older. Are there any other forum members who have both fibromyalgia and ADD who'd like to get this section more active again?

I was 34 when I was Dx with fibromyalgia, although I'd had it most of my life. A friend who was visiting recognized my ADD and I recognized his fibromyalgia, and not long after that, at the age of 42, I found a psychiatrist who first helped me find a pain management doctor, then treated my ADD. She believes me when I tell her that Dexedrine helps the pain from fibro, as well as the brain fog/ADD.

My ADD meds help the pain a LOT, and I've known other people with ADD and fibro who say the same thing. I can't take any of the SSRIs or Neurontin, but opioid pain meds and stimulant ADD meds have worked well for years, with only minor dose increases. Anything that helps reduce pain helps my energy, and vice versa. I had a really good article about the relationship of Substance P and norepinephrine, but gave it to one of my PainDocs and he disappeared shortly thereafter.

So... am I talking to my tribe, or am I talking to myself? :)


I would love to see this more active. I have add, fibro, lupus, arthritis and a few other oddly named issues.

FocusPocus10
12-10-14, 04:45 PM
I would love to see this more active. I have add, fibro, lupus, arthritis and a few other oddly named issues.

problem is cfs and fibro victims are often suffering from their symptoms which prohibit them from keeping active on the forums. Its a catch 22. I would know.

InvitroCanibal
01-05-15, 12:37 PM
I don't have fibromyalgia, but I'd be happy to pull up as much research as I can if you have a question on it.

I'd do whatever I could to help, I've known only one person who had fibro. It was, very hard for her. To say the least.

I truly admire the strength and determination of fibro people.

Unmanagable
01-05-15, 05:59 PM
My doc said it sounds like fibro is a definite possibility, and I'm eat up with osteoarthritis, have no cartilage left between the ball and socket of my shoulder, etc. The things that bring welcomed relief to my aching meat covered skeleton are (without finding a few dear and masterful folks willing to barter, I'd have a lot less to suggest):

Epsom salt baths - I use 2 cups - soak for at least 20 minutes to feel the effects

Massage therapy once a month - the therapist I see incorporates myofascial and lymph node release and is so incredibly gentle, yet very effective, and going once a month keeps my inner fluids flowing much better - my body knows when it's time for the next one

Acupuncture - never thought it would work, but it's eliminated the constant throbbing shoulder pain - I still get pain from overuse, but nothing like it was - I'm fortunate to be working with someone with over 20 years experience and is also a master herbalist and offers help with herbal blends for various nutritional benefits - I had been told by medical staff that the only relief I'd ever be able to get for my shoulder would be via a total shoulder replacement.....wrong!

Eliminating processed synthetic food-like substances and beverages as much as possible and replacing all condiments, etc. with real wholesome stuff - this made a huge difference in inflammation, swelling, and pain.

A few yoga poses....modified....to try to stay loose as a goose.....lmao.....as if. I still struggle with consistency.

I supplement with curcumin, fish oil, B12, Vit D (5000 IU), and magnesium. (all organic and/or kosher varieties - I typically order from Thorne or Swanson)

And sleep.....one of my favorites......it's like death.....without the commitment. ;)

Pilgrim
01-05-15, 06:53 PM
I have a friend with fibromyalgia and I always figured Stims might help.

Hard to watch her sometimes. Love her.

We are here.

Delboy31
01-11-15, 07:02 PM
It looks like most of the posts in this section are older. Are there any other forum members who have both fibromyalgia and ADD who'd like to get this section more active again?

I was 34 when I was Dx with fibromyalgia, although I'd had it most of my life. A friend who was visiting recognized my ADD and I recognized his fibromyalgia, and not long after that, at the age of 42, I found a psychiatrist who first helped me find a pain management doctor, then treated my ADD. She believes me when I tell her that Dexedrine helps the pain from fibro, as well as the brain fog/ADD.

My ADD meds help the pain a LOT, and I've known other people with ADD and fibro who say the same thing. I can't take any of the SSRIs or Neurontin, but opioid pain meds and stimulant ADD meds have worked well for years, with only minor dose increases. Anything that helps reduce pain helps my energy, and vice versa. I had a really good article about the relationship of Substance P and norepinephrine, but gave it to one of my PainDocs and he disappeared shortly thereafter.

So... am I talking to my tribe, or am I talking to myself? :)
[B]Just got back into the forums after not being able to for a long time. You are not alone, fibro is one of many issues. :)

gothceltgirl
09-28-15, 05:45 PM
I was diagnosed with FMS and then CFS respectively. I believe that each probably has a root cause.

I recently discovered a thyroid problem which is autoimmune, I think that's the real root of my FMS symtpoms. All of my FMS symptoms have pretty much gone away.

My CFS though seems to be a recurring infection along w/Eppstein Barr. I have a hard time convincing doctors of this for some reason, they just treat me like I'm imagining it all. I'm so tired of doctor acting like that.

Lunacie
09-28-15, 07:45 PM
I believe the Epstein Barr/Mononucleosis viris caused my fibromyalgia as well.

When I still had health insurance, doctors didn't even believe FMS was real,
much less have any idea there could be a connection with this virus. Then I
lost all health insurance, so I haven't been able to talk to a doctor about it.
I will finally be able to see a doctor in November when medicare kicks in.

moth2flame
09-29-15, 12:06 AM
I have found that Adderall, prescribed for the ADHD symptoms I have in addition to chronic fatigue/pain, DOES indeed help my physical exhaustion symptoms, in addition to my mental ones. This makes me *incredibly* happy, after many years of fruitless suffering! Fatigue is not the only reason I'm prescribed them, but it is part of my overall symptom picture, and I'm just glad something is helping it.

I was never actually diagosed with CFS, but I believe that's part of what I've been dealing with since I was about 12: very low physical stamina, burning/cramping/pain in my muscles (especially legs, chest, etc.) and joints (especially ankles, knees, hips) after even minimal exertion, frequent migraines and tension headaches, chemical sensitivities, and extreme morning fatigue and brain fog making it painful to get up in the morning (regardless of how much sleep I got) or do much of anything useful for at least a few hours after waking up. I never sought a dx, though, because I was led to believe there was "nothing I could do about it," except perhaps narcotic painkillers indefinitely, which I did not want to take even if I were to get officially dx'd.

For many years my dx was "depression," which more and more seems like a catch-all for "we don't know what's wrong with you, so here's some bandaid drugs to make you care less about the problem and/or stop bothering us." :mad: And I don't mean to say that depression is not real, or that drugs for it don't really help some people - it is, and they do! But for me, that was at best an incomplete diagnosis/solution. Plus I developed a deeply-ingrained distrust of most doctors, likely as a direct result of having my concerns dismissed over and over again as "all in my head," or just outright ignored for so long! And SSRIs (I tried several) just made the tendency to just want to get back in bed and sleep all day every day even worse. :( Ugh!!

I was told many times that I was in pain "because was depressed"... gee, could it be I was feeling so depressed in part BECAUSE I was in pain all the time?? :rolleyes: Talk about confusing correlation with causation, sheesh... in my experience doctors do this all the time, and then turn around and chastise "laypeople" for doing the exact same thing they are! Again, it's no wonder I distrusted doctors in general for so long.

I've read about the possible links between CFS and EBV too, and I think this is a good thing to rule in/out if you're able to. Even if it's not the main cause, it certainly appears it can be a contributing factor to CFS/fibro symptoms, based on the studies I've read. There are other chronic often-overlooked viral infections too - off the top of my head, HHV5/HHV6, coxsackie virus, cytomegalovirus, and others - that have been suggested to have a potential role in causing/triggering/exacerbating CFS/fibro symptoms.

Like you, Lunacie, I don't have insurance to cover testing for these currently, but once I do I plan to get this testing done to rule these viruses out/in for myself. Because I am still very interested in identifying any/all possible causes. I guess I'm just one of those people that HAS to know "why" -- I've NEVER been satisfied with being told "no one knows" or "that's just the way it is," and probably never will be!