More questions

Hi all,

I hope everyone's having a nice weekend. I posted back in July & August as being newly dx'd and having questions. You all were very helpful and welcoming, thank you very much. I've been reading along here, read Fibro for dummies, any other web resource I've been able to find, and I'm still trying to understand and figure everything out. I haven't posted or commented on anyone's posts because, quite frankly, I don't know enough to be helpful!

I'm hoping for some advice here. I'm still not 100% convinced fibro is my final or only dx. I finally broke down about 6 weeks ago and went back to the dr (my regular gp that I wasn't too thrilled with) to discuss treatment options so I'd at least be as informed as possible going forward. In talking with him, we came to 2 actions 1) a hip MRI- I've had pain in my right hip for at least the last 3 years and he said regular isolated pain isn't typical of fibro and would usually indicate something else and we should take a look at it and 2) No medication at this point until we figure out what's going on with the hip and if / unless my pain / symptoms worsened and it was determined I needed them.

I had the hip MRI last Friday (a week ago) and have not heard any results, which is typical and I know testing results can take a while. I called yesterday to make an appointment and to find out MRI results only to be told he's now a "part-time" doctor and the earliest appointment is at the end of the month. I have no idea when I'll hear about my MRI results, a part of me thinks there will be nothing on the MRI- since I seem to test negative or normal on everything, and it was a waste of time / money.

*I always tend to type way too much to just get to my point, sorry about that!* Anyway, my biggest question is about pain. I know everyone is different and I know there is no set answer, but can y'all try to generally describe fibro pain to me? I've read that it's not an inflammatory or degenerative disease, but the pain can flare or come and go. Is it deep muscle pain, tendon / ligament pain, feel like joint pain, broken bones / sprains? I ask because the pain I'm in (other than my right hip) does not feel like any of that other than joint pain. Yes, I occasionally get muscle pain but I can always correlate it to something- a bigger than normal walk / run / workout, carrying my 40lb, 3'7" 3 year old around, doing house / yard work all day, sitting too long...you get my point. I may be sore for a day or two, and I mean just sore in most cases- not debilitating pain (other than sitting too long- that one can leave me in pretty bad pain). That's it as far as "chronic / ongoing pain".

The pain / issues I've been having for the last year while trying to figure all of this out are very specific.
-GI issues that were dx as IBS- I watch my diet very carefully and those issues have mainly gone away
-Head / Black out / Floating feeling- 5 episodes in the last year, I feel "off" and disassociated, sometimes feel like I'm going to pass out / black out, can't function during them but am aware of my surroundings until things start to fade away. This is not a normal head rush from going sitting to standing.
-Hand / Finger / Toe / Feet tingling- sometimes massive, all day long other times just mildly annoying. This has decreased but still occurs. For about 3 months it was constant and has dissipated in the last month or so.
-Joint Pain- this is relatively new in the last 6 weeks. I've had random joint pain before but this is my hands / fingers, feet / toes, wrists and occasionally ankles and elbows. (This is different than my right hip pain). It is constantly there, sometimes intense, sometimes just there. I've had a few days where's it really hard to function. It hurts to hold a cup, type, write, chop veggies, cook, and open jars. The pain in my hands has woken me up or been the first thing I feel in the morning. The pain in my feet is by the balls of my feet, by where my toes start. Sometimes it hurts to walk.

It seems like most of my pain / problems tend to be focused on my hands / feet.

I have the appointment with my regular doctor at the end of the month to talk to him about this. The other thing I did, which may have been a mistake, was I scheduled a consult / 2nd opinion appointment with a rheumatologist. My doctor mentioned awhile back that we could also do a consult with a neurologist or rheumatologist (when he was saying I wasn't ready to accept the dx). We did the nerve testing with the neuro (which came back normal) and I just decided to take the step for the 2nd opinion / consult with the rheumatologist since my doctors now a "part time" doctor and I don't want to wait any longer (primarily for insurance reasons). The rheumatologist office made a point of telling me 3 times during my appointment set up conversation that they do NOT treat fibro so since I was going for a consult, if they also determine fibro they cannot treat me. Should I take this as a sign and find a different rheumatologist for a consult?

Anyway, long story, again. Anyone have any advice they can share? Thanks again!

my hip pain is bursitis. I know lots of fibro paatients have this. I was wondering if this is what you are experiencing. I use to sometimes would take steriod injections in them. I am king of scard to right now with the bad batch of steriods that killed 14 people so far. I use a anti inflammartory cream for my hips. It does wonders. I would call on your report, you have a right at least to know in a reasonable time. Especially the cost of one.

My pain is perfectly described like Robins. Sometimes I just want to have a pity party, but I dont. Years ago that is all I could do. I did some theapy work and it help me cope with my illness. Heat is my best friend out of all the meds. I live in Alaska and it can set off a flare easily. We are on the coast and every few days we have a front coming through.

You were describing the spells with your body and head. I have found out my cause was hpyo glycemic reaction. Very common in fibro patients. This comes after eating food high in carbs and sugar and the blood sugar is all over the place. My cogentive thinking is bad at this time. I sometimes have to lay down. I am just now making changes in my diet. It was made a bid difference with the sugar reaction..

My pain is controlled by vitamin supplements and I do take subuxone for pain. I have moderate amt. of pain. I have other health issues like everyone else. I think it comes with fibro. LOL. I have to be real careful with meds. I am very senstive to them causing my seizures.

The biggest thing that has help me was slowing down my life. I dont go looking for stress or problems. I now say NO to people in doing things for others. Sounds bad, but I had to take care of me. As a mother we give so much and next thing I knew I was almost dead from so many problems. I am doing really well now. I have mostly good days. I keep my life simple. As Sherri says do things in moderation. Yes, If you work lots of hrs of hard physical work the next day you will pay for it for a few days actually. I have trouble with this still.

Educate yourself as much as possible. I learned more here then my Dr's could tell me. All I was doing was racking up medical bills with no results. I found this site and it has changed my life. I hope you can get your answer soon. It does really make a fdifference.

Post Edited (ak angel) : 10/13/2012 10:49:58 PM (GMT-6)

Keikihonu,

Hi and welcome (again) :)

I very much agree that if this rheumatologist is already saying he/she can't or won't treat Fibro, find another. Whether or not you end up diagnosed with it, you need someone who is at least open to all possibilities. The good ones are.

I don't fit the picture of wide-spread, diffuse pain so much, either. The great bulk of mine has always been in my sacral area (20+ years) - and, sure enough - it ended up being where a big ol' piece of ruptured disc eventually landed, smack up against the Sciatic nerve. (The 1st MRI of that area, 3 years before, had shown just a bulging disc in that spot. My doctor said that this was very common, and that most people with that level of degenerative disc disease wouldn't feel nearly as much pain as I did - that' s where the Fibro comes in.)

That's not to say I'm not extremely sensitive to pain elsewhere - a little cut can wake me up at night - just that the worst, and the most relentless, is in one area....I wonder if that's what you've got going on in your hips.

I hope you find a good doc and get some answers soon.

Debbie

Keikhonue- the vitamins have to be ordered seperate. I do know you want to know what they are and monitor them after taking supplements. I once was very low on vitamin D and my Dr. started me on high power vitamin D. Well nobody told me to have it rechecked. I never knew vitamins can be dangerious. Well I developed kidney stones. Kidney Dr. Looking for a reason for kidney stones. My vitanmin D was 4 times as high. I learned the hard way.

Deepwell: Is it Elavil (amytriptyline) you take? I used to take it for chronic diarrhea, which I had for years. I only learned last year after a colonoscopy that I have a motility problem with my colon--that's at least part of what caused the problem.

Elavil knocks me out! I used to take 50mg at night, and could feel the effects of that the entire next day. Yes, it definitely helps with sleep!

luvzminis~ MRI was bursitis in both hips, surprise on the left!

I want to thank you all for your help and responses, I really appreciate it! Deepwell~ thank you for the link on the diet / food. In answer to the black outs / near black outs, the do not happen when I'm going from sitting to standing. I'm either sitting & it happens or standing & it happens.

I had a follow up with my regular dr on 10/29 and an initial appointment with a Rhuemy today. BOTH have now said I do not appear to have fibro and my symptoms are not consistent with fibro. Do not know the cause but we're digging again. 12 vials of blood given today, hand & foot x-rays, and hopefully we'll get to the bottom of this. Rhuemy was surprised it took so long to get a referral to one and that I have not been referred to a neurologist. He prescribed me Meloxicam to bring inflamation and pain under control while we wait results. Still need to look it up.

So, no real answers but I'm so happy with how my interaction with this Rhuemy went, how he interacted with me and listened to me. I'm also very happy I went with my instincts and did not start fibro meds wanting to know more.

Thank you again to all of you, not sure where I belong, but I do hope you all have good days.