I've Just Been Diagnosed With Fibromyalgia....

[bellgirl]

Do you all think that Dysautonomia triggers Fibromyalgia? So now my Central Nervous System is involved with increased sensitivity. I think I'm convinced that this is definitely progressive for me. I have Pure Autonomic Failure, and hope I don't end up with Multiple Systems Atrophy. I've read the latest on Fibromyalgia, and it says that it decreases dopamine, norepinephrine, and serotonin. Well, that's no surprise to me!! I've had symptoms to verify all of these things. Does anyone have any insight on this?

[Dizzysillyak]

Hi kim,

Aren't you on the mc protocal ? Fibro has been linked to mast cell dysfunction. There's a great article

written by Cort on Pheonix rising. It's under forum homepage articles. The article was on using ketotifen but

many of us are using or at least trying other allergy meds.

My me/cfs/oi started out with my whole body falling apart within a couple of months of getting a virus

in 1990. Whether the virus caused it or not is debatable. I've responded positively to dietary changes

and now the mc protocal. So I suspect my diet contributed to my level of disability. Continuing

to eat the same foods, esp gluten for 15 1/2 years post me/cfs dx, may have caused permanent damage.

I'm mentioning this because I don't see chronic illness as always becoming worse over the years.

Taking steps to help your body function can help. And may reverse it.

Tc ... D

[bellgirl]

Thanks Dizzy...Mine all started with a virus, too. I've always had allergy issues, and do take Benadryl, and I have Pataday eye drops, and I use an inhaler, Proventil, on occasion for my asthma. I had desensitization for about 4 years for my allergies, many years ago after having my first son, for allergies for grass, ragweed and dust mites. He'll be 27 in February, so that was awhile ago. I've been watching my diet, and doing so much better with my meds and supplements, too, but when I told my ANS doctor about my flu like pains in the back of my legs, she thought I might have fibro, so after going to the rheumatologist, and being equivocal (not negative, but not positive...in limbo) with my ANA, antinuclear antibodies, and SLE-70, Scleroderma, I'm concerned, but I really didn't realize how much pain I was in, until he started me on Neurontin. I'm more functional, and I've always exercised, anyway, no matter how I felt, and he wants me to do more stretching, so I've started yoga to add to my regimen, and I believe that has helped, as well. I have to say, that since the holidays are here, I haven't been eating as well, as before. I love avocado, smoothies, bananas....all the good nutritious foods, but lately have gone off the wagon, so to speak...always thought I could have some mast cell issues, and I can't seem to gain weight. I thought my beta blocker might take care of that, but it didn't. Any ideas on how to gain weight on a diet like this?

[Dizzysillyak]

Hi kim,

We have a similiar background which is why the mc protocal may help you. Have you looked to see

if high anas are linked to gluten sensitivity ? Or maybe to other foods or chemicals ?

I started having allergic reactions when I turned 19. I'm 57 now. I tested positive for almost everything

on the skin prick test about 8 years ago but I didn't stay on allergy meds because they make me

feel drugged.

Last year I started having episodes of throat swelling so I started taking Benadryl

when these happened. Now these are happening daily so I need more meds and an epi pen just in case.

My allergist and I are working on which ones are best for me at this point.

I hope you'll find that you need less meds for symptoms if you get your allergies and/or mast cells

under control. I haven't tried taking supplements yet because I have anaphylaxis but they might

work for you.

I'm post menopausal so keeping weight on isn't so hard anymore. ; ) I'm on my version of the wahls diet

and eat nuts, avocados, meats, plenty of fruit and veggies, etc. Grass fed meats like Lamb are a good

source of calories.

I just started eating teff pancakes (yum) with maple syrup and walnuts last month and it appears to be making me chunk up. It's the first grain I've had in 7 years that didn't make me feel weak. Granted it may have nothing

to do with teff. I'm just experimenting with it at this point. Legumes are still out.

Tc ... D

[Katybug]

Hi Kim,

So I was diagnosed with fibro twice in the last 5 years. In my heart I just knew it wasn't the right diagnosis so I kept pushing and finally saw a geneticist and was dx'ed with EDS. I already had the POTS and MCAD dx. Since there seems to be a lot of annecdotal info that these three often go together, have you ruled out EDS as the source of the pain?

[issie]

I had a doctor tell me today that he thinks that FMS is a problem with too much magnesium in the tissues. Like there are illnesses with too much iron (Hemocromatosis) and too much copper (Wilson's Disease). He thinks FMS is too much magnesium. He said if you take a biopsy of a person with FMS tissues - it will be extremely high in magnesium. I don't know if he is right ---but, will be leaving my magnesium off for awhile and see if it makes a difference.

Issie

[Dizzysillyak]

Gee I don't know about this doctor, issie, ; ) ... Where are you hanging out nowadays ?

My body craves magnesium. I have to take Natural cal, mag citrate, everynite to have bowel movements. I take Doctor's best chelated magnesium for pelvic pain too. If I remember correctly, my doc said that mercury pulls magnesium so that's why I need it. My labs showed high mercury.

Btw, are you on the mc forum ? We could use your expertise there too. Tc .. D

[issie]

Dizzy,

Which MCAS forum are you on? I've been on a couple of them. But, I'm laying a little low in all the forums lately. Thanks, for the vote of confidence though.

I've always got something up my sleeve. Still not ready to talk about it yet. But, researching and experimenting. This magnesium thing is only a part of it. Will give more details later. Still a little on the fence about it all and trying to be the guinea pig at this point.

I will probably do a thread after the first of the year. Will let us all get off to new journeys. What I'm learning and doing will be very controversial and there will be lots of discussion on it. So, will hold off for now. I think it has some merit and it might be something we are looking for.

As for high mercury. If you don't get the fillings out of your teeth before you start a detox of heavy metals ---what you do, will pull it out of your teeth. I think I've already told you this before. There are other things to chelate heavy metals out and would probably work more effectively.

Issie

[Dizzysillyak]

Hi issie,

I'm supine every hour at least again so I hang

out on forums. Wal-zyr (25 - 30 mg) helped my oi tremendously at first but was making me feel drowsy. So I

started experimenting with different meds and not taking so much zyrtec. I took 35 mg Wal-zyr today and

nothing else and felt much better tho. I'm sipping green tea to counter the drowsiness.

The mc forum I'm on starts out with mastcelldisorders in the forum name. We have a mast cell section at Pheonix Rising now too tho. And we've got some people who know a lot about these. Not me yet but maybe someday. I'm xchocoholic over there.

I'm looking forward to seeing what you've been researching and experimenting with.

My fillings were removed in 1992, so I'm ok there. I had a mouthful and I remember my dentist saying he

was trying to keep it from getting back into my body as he removed it. So whatever made it thru may be gone by now.

I was eating a lot of fish but backed off recently. I've yet to seriously address chelating heavy metals but I've eaten tons of cilantro over the last few years. I need to re-treat for parasites too. I never did the second round because treating the first time wiped me out so bad. I'll look at this again after the holidays.

Tc ... D

[Dizzysillyak]

Hi Kim,

I just realized that I completely forgot to say that I had discovered bacon and tomatoes cause my

fm pain and muscle spasms a few years ago. I was already on the gfcfsf + chemical free diet

and most of my symptoms were gone but I

was still having pain.

Thru process of elimination, I found that these foods triggered my fm.

I tried these many times over the last 7 years, including just recently, but they still cause pain. I'd hoped taking mc meds would help but it didn't.

I suspect I have another trigger that I rarely eat because once in a blue moon I get my pain back for a couple of days.

Tc ... D

[issie]

I don't want to get too far off the subject on this thread with MCAS. PM me and I'll tell you what I'm up to on that one.

I'm still on the fence a little and really didn't want to hear the doc say that about magnesium - because I do think it has helped me. But, I'm willing to leave it off for a little while and see if it makes a difference. Just passing on what was told to me.

Issie

[bellgirl]

I've heard that you shouldn't take Neurontin until two hours after anything with aluminum in it. So I've been slacking off the magnesium, because of it, to get all my doses in, so I don't think mine is because of magnesium. I was also on a very low dose, compared to most patients, anyway. My doctor said they are referring more to antacids though, but now I'm not sure what to do, Issie. I feel like magnesium has helped me sleep and according to my Neuro is good for my nerve health. Lot's of my symptoms mimic MS, as well.

Dizzy, I love tomatoes, and I've never gotten any bad reactions to them. I love tomato sauce, too, so I'm Ok there. I can't have too many acidic juices like OJ or my bladder becomes irritable, so I have to be careful there. I just ate a salad with a whole avocado in it yesterday. Avocados have 20 nutrients in them. They are so good for you, and they are full of the good fat!! I'm post menapausal, too, Dizzy, I'm 55. Is your back pain in the middle to upper part of your back? I've had all kinds of scans and ultrasounds to no avail. I did have gastritis years ago, and that was awful; this isn't as bad as that. I have that pain in my back, no matter what!!

[bellgirl]

Oh, Katybug; I forgot to mention that I talked with the rheumatologist about EDS, but I only have hyper extension in my elbows. The rest of me is pretty stiff. It's the Scleroderma I'm concerned about....I'm on the edge of positive for the systemic type.

[Dizzysillyak]

Hi kim,

I'm obviously not very good at explaining stuff .. Lol ... We're not going to have the same triggers.

I jealous that you can eat tomatoes tho. I love anything with tomatoes in it..

I had body wide fibro pain and muscle spasms for years stating in 1990. In the beginning,

my car ins co paid to have a massage therapist

come to my house 3 times a week for several months but it didn't do anything for me. I'd been in two car

accidents the year prior to getting sick so we had no idea what triggered my bodywide neuro problems.

I was like this for years and took muscle relaxers and pain meds most of the time. After awhile it got to where

I only had pain if I did anything physically taxing. Yardwork, vacuuming, bringing in the groceries, etc.

I was like that until I went on the elimination diet. Then I narrowed it down to tomatoes and bacon. And

now I don't have fm pain.

I hav pain from the car accidents tho. And I get pelvic and bladder pain from eating nuts and chocolate.

Actually I appear to fine with walnuts. I'm a mess ... Lol .. Tc .. D

[Katybug]

All of you may enjoy a workbook that the geneticist referred me to for non-drug, no cost self-pain management. It's called "The Trigger Point Therapy Workbook 2nd edition " by Clair Davies (who's a man btw). I have been treated by a PT previously who used trigger point therapy and it gave me so much relief! I just got the book and have just gotten through the extraneous stuff. I am excited to now get to the meat and potatoes. It seems well written and worth the $15 on Amazon so far.

[Katybug]

Ugh...duh.....my brain is gone today. The point of this book suggestion is two fold. First, it might help all of us self treat some of our pain and I could use a little less pain right now. Second, it talks about how to differentiate between fibromyalgia pain and trigger point pain and how they often co-exist and feed off each other.

[spinner]

Im not commenting on your condition, you've definitely been on a tough trail with multiple issues.

I was diagnosed with FM as well, but im wondering is it because youre experiencing increased joint pain? I have to say this controversially, but I have always believed FB is actually the presentation of something else that they cant necessarily diagnose, which in your case may be DA.

Are they trying to get you on lyrica? Id just go into that whole thing with my eyes wide open. Theres only so many meds we want to be on at the end of the day.

[issie]

Kim,

I was DX'd with FMS years before I got my POTS DX. But, then was DX'd with EDS. So, thinking it was that all along and probably isn't FMS ---but, I have all the tender pressure points. I know it is possible to have both.

I'm starting a new diet and hopefully it will be helpful for this too. I will post about it more in the future. I want to try it out a little while ---cause it will be controversial ---and then will be talking about it, the doctor and what else I'm doing. First, need to experiment a little more. Still a little on the fence about it. So . . . . .

Hang Tight! It might help you too.

Issie

[bellgirl]

Yoga has been helping me stretch, and I'm less stiff. My neck and head are very rigid, and I have pain in my back, and flu like pain in my upper thighs, sometimes I used to have pain in my calves, but I thought that was due to pooling. Spinner, I don't really have pain in my joints, with the exception of old injuries, and don't have swelling. They ruled out RA. I just thing my peripheral nervous system has been wacky for so long without meds, that it started affecting my CNS!! Made everything nerve wise sensitive. The book sounds like a good idea Katybug and I'm interested in how you are changing your diet, Issie. Does anyone know of anyone with systemic scleroderma? It's also a connective tissue disorder that can affect the organs, and eventually causes sclerosis in the lungs.