Newbie's story and questions

General
1

Hello everyone,

I've been following and reading for awhile. I guess I am lucky my GP understands fibro pretty well and has agreed to see me for a super discount until I can afford insurance again. Apparently mine was "born" as a result of knee replacement surgery that then got infected. They hospitilaized me after 4 different huge rounds of antibiotics orally and even a vacuum sucking machine trying to suck out the infection. In the hospital I was given 4 rounds of some super antibiotic IV because they were sure I had a super bug. Turns out no such bug, had to reopen leg and scrape out infection that had walled itself off from blood flow and the open sore. Since then I assumed my problems were arthritis that had gone wild but upon getting a bad kidney result on a test they removed my NSAID and daily the pain increased until I was useless. In emergency appt. saw the PA who gave me VIcodin and more to no effect. She offered steroids but I freaked out over that. Finally saw real doc, he listened took one look and said fibro. Fortunately for me the combo of Gabapentin, Cymbalta (hooray for free samples), and Tramadol as needed has controlled the pain providing I keep to the schedule. Looking at the list of symptoms and thinking back I can see this was building for a long while, I had just accepted the pains as part of aging (60 in June). Now if I miss a dose I get pains in my elbows followed by tingling numb hands then stiffness from shoulder to shoulder up my neck and my scalp hurts so bad I hate even my hair touching it. From there it is my rib area and then all hell breaks loose everywhere. Thank God I am pretty good at scheduling so keep the pain at bay and have had only one day in two months where the meds might as well have been M&M's that at least would have tasted good! Harder to live with is the overwhelming desire to just sleep.

Due to the knee I had to retire early from teaching, low money, and my retirement system has forced me to apply for disability. We have modified the application now to include the fibro but it has been 18 months already with this application. I had been subbing 2-3 days a week but since the fibro take over, find the stress not good and the exhaustion makes it hard to take a job against an uncertain day, so now Ionly take partial days as they come in. Only good that has happened is I found out I qualify for my deceased ex's SS starting in August so if I can hang on that long I may have enough money to actually live. And maybe someday disability will come through (lol).

Now my questions. Anyone have trouble eating? I mean swallowing and eating more than a tiny meal? Food seems to set off muscle spasms throughout my rib area making breathing painful. Makes no difference what the food, healthy or not.

Anyone tried Napolea? I have a friend who swears by it but he is healthy. Don't want to waste money for a drink for nothing.

Also same situation with Immunolog (might have name slightly wrong) I researched this and find it is whey protein. People online swear it cures their fibro and they ned no meds. Anyone tried?

Anyone know a good source for second hand electric scooters? I live in Phoenix, AZ. I have accepted if I am going to keep up with my grandkids this is going to be necessary. The grandkids are my pride and joy and life and I REFUSE TO LET FIBRO TAKE THAT AWAY TOO. Besides they have already said grandma we'll push a wheelchair if we have to. Coming from kids aged 11-2. My daughters are willing too but I can't be that burden.

I am sure there was other things but the mind is now blank and the hands tired. It is great to know there are others out there, although with my magic wand I would wipe this out for all. Love to hear from anyone. If you are on the west side of Phoenix maybe we could even meet for a soda. Faye

2

Hi Faye,

So sorry you are up against so much. I'm very glad that you posted, and though I am not a Dr, I can relate to the terrible rib pain. You can click on my photo, to read my profile, I'll just talk about the rib pain.

When I first met my present Chiropractor, I had a gall bladder that had been going bad for about 20 years, was having a big problem with digestion. Had the gall bladder removed, still having problems digesting my food. I did the thing of eliminating a different food type, went on an anti-inflammatory diet, quit wheat, then meat unless it was grass fed...

Not much help, my Chiropractor suggested Spectrazyme, explaining that as we get older we have less and less digestive acid to break down our foods, and that most of the prescription meds take away the precious few digestive juices rather than supplement it. This did the trick for me, I could even eat cheese again, meat again and not feel like my ribs were going to crack. After a few years, I started to take them less often and before you know it the rib pain started up again, to the point that my Rheumatologist diagnosed me with Costochondritis. I got back on the Spectrazyme and it eased up again.

Chiropractors know supplements like GPs know meds. I have searched the net for something that may be just about as good, but nothing else comes close, the cal/mag/D3 that he suggests are top notch as well.

I do not sell these, and don't believe in 'miracle cures', but under the suggestion of a Doctor as excellent as my DC, I believe supplements and vitamins can really make a big difference for the better in our lives.

Always check with a Doctor before adding any supplements to your meds. Here is a link for you.

http://www.pureformulas.com/spectrazyme-60-tablet-bottle-by-metagenics.html#sthash.DMxuGyKK.dpbs

Wishing you well,

SK

3

BTW, I have been buying my vitamins through Pure Formulas lately, free shipping, and the price of their supplements are the same as all others, and this is NOT a site where they want to automatically send them every month, you order them when you need them.

4

Hi Faye,

Sorry for what you are going thru, but it is almost exactly what I go thru. Today is a very bad day. It is noon, no shower yet, I am going to a friends house for a scrapbooking weekend and I cant even get excited about it.

Early on in my Fibro journey, I also took Gabupenten, but it did not work for me, so they put me on Lyrica. At one point I was on Cymbalta, but I kept breaking out on my abdomen area and apparently it got worse at night because I would wake up every morning with blood all over my sheets from digging at my self so after 3 mos. Dr. took me off of it. It did work on my pain though. Now I take Lyrica and Nucynta. That usually keeps the pain at a manageable level but then I have days like today! Fortunately (sp?) these days are usually pretty far apart, so I am happy and excited for that. I am sorry if this sounds like I am complaining because I am usually very upbeat!

I live in Mesa but I would be willing to meet you for coffee/soda sometime. Maybe we can meet in the middle? Let me know.

I hope you feel better. If you find that magic wand I want to be the first to know. Also, I understand what you mean about the grandkids. It is humbling when they say, Grandma I can push you in the wheelchair. If I have both of them they can get it out of the car for me, but if I only have one, then I have to help. They are a great help to me. They are the lights of my life. They are 8 and 10 and I love them more than life!

I am looking forward to meeting you.

Jackie