Anyone else dealing with fibromyalgia? - Page 3

[JaneS]

Originally Posted by tanyalynn

You've seen the one in the TF forum, right? That's the most active one I've seen currently.

Now I have!

[Intuition]

Aw thanks, JaneS!

It wouldn't be very informative to stalk me, unfortunately, as I don't post very often. But yes, there is a great thread going on in TF. I cheated and had a handful of Skittles last night, and BAM the pain was immediate in my arms. It is hard, but when the pain comes instantly like that, much easier to stick to.

[tireesix]

Both tests were done at the same time of year, I can't remember the amounts of the first one but the second one I 27 something or another, apparently borderline for requiring injections over daily tablets and I am imagining that with both tests being done on the NHS in uk, they would have used the same kinda test (it was done in the same hospital), the same lab and used the same standards. The only difference between them was that one was done in gynae, one was done in rheumy but the gynae I was seeing was ruling out things so I could be diagnose with CFS or FMS, she had previously worked with specialists dealing with CFS.

My DEXA scan came back normal which completely took my rheumy by surprise, that was in either 2007 or 2008 (apparently I am higher risk of osteoporosis because of the EDS) and they also wanted to rule out Osteogenesis imperfecta, I have the blue sclera and and I am prone to breaking bones which is why they thought of that, but all the tests came back negative for that as well.

I did something real stupid yesterday!!!!!! I walked to the pub where we have our fibro meeting and am currently suffering!!!!!! If I rest enough, I can cope with a 2 mile walk but that literally means doing nothing for a few days before and doing nothing for a few days after. Twas lovely though, the sun was out, it was so hot!!!!!!!

Meeting went well, I just had lemonade for a change, a nice meal and we got to have a good talk about stuff.

[Arianwen1174]

tireesix, I'm so glad you don't have Osteogenesis imperfecta, but how terrible to have to deal with broken bones! I really hope you don't pay for your walk for days on end. DH and I have been walking some almost every day and even though it's difficult to get out some days, I'm really glad we're doing it. I'm learning to listen to my body--if we're heading to the store that's 1/3 mile away and 3 blocks in I'm wondering if I shouldn't walk that far, it means I shouldn't walk that far! It must be so nice to get together with others who have fibro.

Yesterday I got a bunch of stuff done around the apartment. It had needed to be done for ages. I purposely invited DH's parents over for dinner tonight so we would be forced to finally get things back under control. I told DH that we're going to take care of things like that every weekend so we can keep it that way. I was/am rather stiff and achy and too many of my muscles want to cramp up. Our bed is terrible and that doesn't help at all. But it was nice to push through the pain some and get things done. I also have some "illness" issues going on that are making me rather achy and flu-y feeling. I'm sure many of you know what I mean--a small issue (or a couple of them) like a pimple on my face and some scrapes on my foot make me feel sick like I'm coming down with the flu. That is so aggravating!

Time to lay down again to try to sleep before I have to be awake in 4 hours. Having a latte at 6 in the evening was not a good idea and I knew it, what was I thinking?!

[LionessMom]

subbing.

i have had fibro for a long time but diagnosed for almost ten years. i am 34years old and have 4 kids.

i feel worse when the weather is icky. and when i forget to take my vitamins.

will be back to read all the intersting info.

[QueeTheBean]

Not meaning to open a can of worms, but . . .

I get very confused with all the vitamin/supplement stuff. I recently just stopped taking everything after reading that there haven't been any reliable studies proving that any of them are effective. That said, I know that there are a million studies out there that show otherwise, but how do I know what to believe?

I am so frustrated.

[delightedbutterfly]

Queethebee... I think it is finding what works for you. Does taking extra vitamins/minerals hurt? Not really but if they aren't helping then it can be frustrating. Also a big problem is the dose and a large part of what I think JaneS is trying to get across is that we need HIGH doses of many vitamin/mineral therapies before they do any good. I am sure she will be back with her thoughts, maybe we can get her to share what supplements she thinks are the most important and the dosage?

I had a mini break down yesterday... All started by a hand towel. Dh tries his hardest to pick up my slack around the house and i hate the feeling that if I want things done "right" (my right, dh's right is his own) then I need to be doing it myself but since I can't do what I want or as much as I want it gets me down and frustrated... Anyone else feel like this?

[LionessMom]

Originally Posted by brymommy

I had a mini break down yesterday... All started by a hand towel. Dh tries his hardest to pick up my slack around the house and i hate the feeling that if I want things done "right" (my right, dh's right is his own) then I need to be doing it myself but since I can't do what I want or as much as I want it gets me down and frustrated... Anyone else feel like this?

yes, and it leads to no one wanting to help me. DH doesnt want to do anything around here bc he is afraid i will tell him he is doing it wrong. so i have learned to let go. iif i want it changed and i feel like doing it then i do it. if not, oh well. no one is going to die bc the towels are exactly right.

[delightedbutterfly]

Originally Posted by LionessMom

yes, and it leads to no one wanting to help me. DH doesnt want to do anything around here bc he is afraid i will tell him he is doing it wrong. so i have learned to let go. iif i want it changed and i feel like doing it then i do it. if not, oh well. no one is going to die bc the towels are exactly right.

Of course. Dh will always have his style and that's ok. Trust me I am thankful it even gets done... And I let him know how much I am thankful for him.

But it's hard letting go of the self anger sometimes. The "I-want-to-do-it-but-I-can't-and-now-I-am-frustrated-with-myself" frustrations... Sometimes it is hard to "just let go".

Probably doesn't help that I am dealing with some other stuff as well...

[Arianwen1174]

Gentle hugs tonight, ladies!

Thankfully today was a pretty decent day. Did have a lot of that achy, coming-down-with-the-flu feeling that is way too familiar. Sometimes I think it's worse than the intense muscle pain because it's just. so. nagging. and awful. Yuck.

I just ordered a new supply of B-50 complex and am hoping that will help at least some things. I'm trying to remember now if it's helped with my sleep in the past. But I know it can help with nerve function and that sort of thing in general so hopefully it will make a difference. I also have Tourettes and it can be helpful for that but I'm not sure if it's helped in the past. I'm also starting vitamin D (2000 IU/day) because my doc had my level checked last week and it was low. She said she'd read that Vitamin D can be helpful with fibro and wondered if I'd been sick a lot lately. Nope, but I'm not all that surprised that my level wasn't right. Forgot to ask for the level.

Hope you all have a lower-pain day! Time for sleep for me. (Why yes, I do have a blankie in real life! lol)

[LionessMom]

Originally Posted by brymommy

Of course. Dh will always have his style and that's ok. Trust me I am thankful it even gets done... And I let him know how much I am thankful for him.

But it's hard letting go of the self anger sometimes. The "I-want-to-do-it-but-I-can't-and-now-I-am-frustrated-with-myself" frustrations... Sometimes it is hard to "just let go".

Probably doesn't help that I am dealing with some other stuff as well...

i still have the self-anger too. but i have to accept things as they are. it is a constant thing, reminding myself to let go. it is great therapy for my OCD. lol

[JENinOR]

Yeah that. Fibro here. Will go into my story when I have more time. Just want to ask do you all have the tenderpoints? I know some drs will dx fibro without them, but I think technically they have to be a symptom? I have all 18 and way more. They are all over my body and feel like bruises to the touch.

http://www.fibro-myalgia.com/tenderpoints.html

Mine are horrible when I eat my allergies or exposed to chemicals and so, so much better when I'm good. I only got my food allergies dx a few months ago, so am hopeful for the healing to continue progressing. Espcially when I can afford supps!

Just want to say that I talked a friend into getting food allergy testing and a comprehensive stool analysis who had fibro and her results were amazing. Her pain is so horrible and she has been to dr after dr after dr and exhausted the medical route. She found out she has horrible food allergies. Also, on a scale of 1 to 5 her candida load was a 4 plus. She had several overgrown pathogens in her GI as well! After getting on an antifungal/antibacterial and supplements that her ND prescribed she is doing awesome!! Night and day. She has hope again. Her healing journey is just beginning, but it going so well!

I have so much I could go on and on about, but honestly, I've learned that people will either do their own research and be responsible for their own health care or they won't. There is a lot to be discovered once you begin looking. and educating yourself.

[JENinOR]

I know there are other good tests out there, but after doing my research this is the only company *I* would go through for allergy testing. It cost me $250 to test for 96 foods, so the price is right.

http://www.usbiotek.com/

People do waste money on testing. Make sure to do your research beforehand if you go that route.

[JENinOR]

JaneS, what doses do you recommend of the mag, b12, and folate? Also, I was all set to buy some methyl b12 but then read somewhere that if you have amalgams this form of b12 may be detrimental! Have you heard that before? I have all the symptoms of b12 def. as I'm looking into it. I'm hoping to get my amalgams out asap as I feel this may be the root of my nutritional deficences and need for high levels of nutrients. I have come across ladies whose tenderpoints (any many other symptoms) went away after removing mercury fillings!! Mercury suppresses the immune system anyways, so it can't but help.

[JENinOR]

Originally Posted by Intuition

Last summer, I was diagnosed with Fibromyalgia and Rheumatoid Arthritis. I had to pull over after about a block of driving due to the pain of pressing on the clutch.

I was finally diagnosed with Celiac disease the autumn before that, after 29 years of hell, and very, very frightening symptoms. Once I went off gluten, I started feeling horrible joint and muscle pain, which my doctor was pretty certain had always been present-- I just couldn't feel it under the debilitating digestive pain. With the gluten gone, I suddenly realised I had all this other pain, and was diagnosed. I also have PCOS and had secondary infertility when trying to conceive my second son.

I went to a wonderful rheumatologist here in Vancouver. She signed me up for physio, a bone scan, bone density test, and a dermatologist (my dermatitis herpetiformis is gone, but I did have some rough patches and eczema on my hands and feet, as well as deep cracks). She gave me some prescriptions for two anti-inflammatories, and a third for a drug to help the side-effects. Yikes! I was pretty wary about filling these prescriptions!

Well, a few days later, a family member passed away, and I went over to see my mum. While there, I took all grains out of my diet, because even rice was making me feel bloated and tired. I also took out dairy, because it severely affects my behaviour and bloats me up as well. I removed sugar because I am very overweight. Lastly, corn, because it was doing the same thing as the rice. My pain completely disappeared within a week. I started sleeping, I felt awake, I felt amazing! Now, I am on the primal diet, and when I slip up with anything (particularly dairy or sugar, as I am still off grains), I get pain almost instantaneously. I am taking a lot of supplements, and my iron, after a lifetime of being anemic and taking floradix, has finally gone to normal.

I know it's hard. I know it can be expensive, but it doesn't have to be if you cut out all the grain subsitutes. I just eat fresh vegetables, berries, nuts and seeds, healthy fats like avocado coconut milk, and meat. My last grocery shop was absolutely massive, and my husband almost fell over at the price. It was my best, least expensive shop ever.

If anyone is interested, I am currently on this program: www.marksdailyapple.com

These are also worth looking at: http://www.healingnaturallybybee.com/articles/arth1.php

http://www.healingnaturallybybee.com/articles/arth2.php

This is so encouraging! I'm planning on starting a variation of the SCD called GAPS. Here's another encouraging of a woman whose fibromyalgia was HEALED after starting SCD. I bought Breaking the Vicious Cycle and the Gaps books to begin asap!!

http://www.breakingtheviciouscycle.i...bromyalgia.htm

Here's the GAPS Diet website.

http://gapsdiet.com/

[tireesix]

I am going for a lignocaine infusion at some point soon. Saw my pain doc yesterday and she was fantastic, told me fibro is a real disease, they just don't know why it happens.

She admitted that I probably had had it since my early teens and she was sorry nobody picked it up sooner. The longer you have it, the less likely you are to ever fully recover from it, so I have had it over 16 years, thats over half my life, (29 now).........

Everyone has their theories about it, I am sure I was born with it and its just the way I am, easier to cope with it that way.

Anyway, hopefully the infusion will help the EDS, arthritis and fibro, which would be nice, but we shall see!!!!!!!!!!!!!!

[Arianwen1174]

What a great doc you have, tireesix! I sure hope the infusion helps a lot. How does it work, do you know? I looked a little on Google but a lot of the info was medical abstracts that I couldn't read through right now. What an interesting idea, though.

Also interesting is when fibro may have started in each of us. I can say for sure that I had some of the same symptoms as a kindergartner that I have now. I think the trauma I went through as a young child caused my fibro (traumatic birth, a congenital heart defect and the issues and surgeries that went with that, and severe abuse). It was low-key until the late-90s--I think a car accident really kicked it into high gear. Either that or it's quite a coincidence.

Hope everyone has a relaxing weekend--a holiday weekend for us here in the US.

[tireesix]

Ok, apparently, the infusion works by latching onto all the nerves (which is one of the reasons you have to monitored during the infusion because it attaches to all nerves including heart ones etc and its toxic to them) and that *should* help give some pain relief because local anaesthetic injections in trigger points etc is supposed to help (they can use infusions for all sorts of things including headaches as well and I have been having some whoppers these past few months)...........

Its pretty much the last thing I have left to us (except for muscle relaxants and they really don't want to go down that road). We have tried pretty much everything else, accupuncture, physio, chiro, counseling, CBT, numerous drugs, supplements etc. So this is kinda it for me lol.

The infusions effects should last a few weeks and then I should be able to get another one and so on........ Toxic bit is a bit scary but I keep thinking about the fact that I have a family I need to be more functional for...

[Arianwen1174]

Wow, that sounds heavy! Sure hope it works.

[paintedfire]

Subbing.

I have fibromyalgia.

I also have lupus, neuropathy, hypertension, depression, anxiety, OCD, severe allergies and asthma, reflux, migraines and cluster headaches, and pretty severe vertigo - among other things.

My Mom also suffers from fibromyalgia, although hers stems from silicone poisoning from ruptured breast implants. Every so often bits of silicone work their way through her skin and leave these little round sores. It's crazy.

I also have issues following a coma I was in when I was nine (details on that can be found here).

More recently I have begun developing an increase in what seem to be neurological symptoms but my doctor and I decided to put off the MRI I had scheduled until the baby has had a little bit more time to develop.