Newbie here with lots of questions

Discussion in 'Fibromyalgia Main Forum' started by lisadot, Sep 29, 2005.

  1. lisadot

    lisadot New Member

    Hi everyone. I was finally diagnosed this summer. I'm a (clinical research) nurse, and pretty much figured out I have Fibro on my own. I saw a rheumatologist three times, and I won't go back to him. I think he's on some kind of a fishing expedition, and I don't like it. I have little respect for him at this point.

    He has done over $3500.00 worth of blood tests (all the autoimmune stuff, interleukin and tumor necrosis factor, routine labs as well), and that may not be the whole total. Thank goodness insurance covers a good portion! He insisted on doing his own series of xrays as well, but I don't know why he ran some of them. I understand the TB test (negative) and chest xray, but I don't get the spinal series completely. He hates that I want my test results before I see him in between appts. Sorry, but as a nurse, my mind can work overtime, and I won't wait 3 to 6 wks to get answers. On the last visit he walked away from me, and put the books I'd brought with me behind him. Was a pretty strong signal he has zero interest in my questions or concerns. His staff refuses to give me copies of my results without his permission, and I know that's not legal.

    I see my gastro doc in the morning, as I had a major flareup of what I think is gastritis yesterday. I'm thinking maybe eating cucumbers did me in? Anyhow, I do have IBS, no doubt like so many others. And I have migraines, more than I would like. I'm feeling as if I'm a hypocondriac at the moment, but I know what I'm feeling inside my body.

    I have depression and anxiety - thanks to having had an abusive ex who is bipolar, and because we had kids together, I can't totally get him out of my life. I think my immune system was leveled by all his suicide attempts (12 over 20 years of marriage) and his self-inflicted cutting escapades. Ugly stuff. Thankfully, I will celebrate my one year anniversary this weekend :eek:) I married a very caring loving man. I can tell my anxiety increases my pain level, so I guess that part is "psychological".

    I tend towards hyperthyroid, which seems to be the opposite of what it might normally be. The doc felt it best not to treat - fine by me.

    I've also had a low grade fever for months. I asked the rheumatologist about it, and he said it wasn't normal for fibro. Anyone else have/had a low grade fever? I had a Sed rate come back at 36 the first time, but recently it was 12. Below 20 is normal for a woman.

    I did have yet another UTI, but was treated. I tend to have chronic yeast infections, and even got to the point where I was using refrigerated caps of Acidophillus and some of Dr. Teitelbaums vitamins. The rheumatologist I saw doesn't "believe" in the female connection with yeast problems or vulvodynia, which I also have. I think he's wrong, and so does the PT I see for the pelvic pain problem. Geez, this does sound like I'm a hypocondriac! Ugh. Someone smack me!

    I don't want to be on pain meds, and rarely take them. I don't like the fact I have to take Trazadone for sleep/depression, but without it I'd be waking up every couple of hours with panic attacks. And I know I'd be a lot worse off without the Flexeril I take at bedtime. I've taken more Diflucan for yeast than I can remember (and tested negative for AIDS and diabetes - thank goodness).

    Funny, I felt so good while I was on a cruise this summer with my hubby. Hardly any pain. Minimal stiffness, as I recall. Got off that boat, and wham! Back in the thick of it. Had a migraine in the airport while waiting to go home LOL!

    Anyhow, didn't mean to post an essay. Just curious if anyone can relate to my symptoms.

    Thanks,

    Lisadot in Southern Cal - close to these awful fires, and praying for all those who are at the flames borders!


  2. Francey54

    Francey54 New Member

    Hi lisadot:

    Welcome to your new home. You will find lots of compassion and support here.

    So sorry you are having such a difficult time with your Rheumy. He sounds kind of strange making you pay $3,500 on all kinds of tests and then not wanting to give you the results??? I would suggest you find a more compassionate Rheumy who treats FM and CFS. If you do decide to go to a new Rheumy before you go to the appointment ask his nurse or secretaty on the phone if he treats many FM patients, if they say no, keep looking.

    I am so sorry hon that you had such a difficult marriage to someone who is bipolar. It takes alot of patience to be with someome like that. Congratulations on your ist anniversay to a new husband who you say is a caring. You deserve that after all that you have gone through.

    All those horrible ailments that you are going through are really hard, I too have and we are not hypocondriacs. We have a legitimate health issue that needsto be addressed by a caring and knowledgeable doctor.

    Honey, I am here for you whenever you want to vent your problems, your happiness whatever. I will be your friend. You will find lots of friends here.

    God bless you and I hope you can find a new Rheumy soon who can give you the care you need and deserve.

    Love and hugs,
    Francey

    PS Forgot to mention about the fires in California. You will be in my prayers and all Californians who are in harms way. Please be safe.
    [This Message was Edited on 09/29/2005]
  3. elsa

    elsa New Member

    Even though you were just diagnosed, you are well ahead of most people who are just starting out. I'm glad you punted that doc ... the stress he added to your life was not worth it.

    I didn't see any test results for viruses. When you mentioned low grade fever for an extended period of time I immediately thought you probably have CFS too.

    Not everyone does, but they can occur together. Don't feel bad about the pain medication and don't short yourself on relief by being "strong". As a nurse, I know you understand the nerve damage you risk by not treating chronic pain.

    Doesn't have to be rx medications ...

    I can't take any medications that might cause my brain to be 2 days behind my body. LOL ( I have horses that I work with and it's not a good idea to be jumping without a brain.)

    Having said that, I do take tramadol ... 100mgs every 4 to 6 hours plus 600 mgs ibuprofen every 6 hours. My pain is managable.

    I also take lunesta for sleep. Having my sleep disorder under control has also made my symptoms much better.

    I'm sorry for the tough times you went through with your ex-husband. I'm not sure I could have handled that. I would say that was a most likely trigger for your FM.

    Anyway, I wanted to welcome you to the board. It's a wonderful place for information and support. I hope you start to feel better soon.

    Take care,

    Elsa

    PS The frustrating part of having FM is that it affects so many different systems and causes so many different symptoms. Please don't feel like you are a hypochondriac. You positively are not ... and like Francey said so beautifully ... we're here to back you up when you start to have doubts about any of this.
    [This Message was Edited on 09/29/2005]
  4. rigby

    rigby New Member

    I am a nurse who is unable to work due to CFS and FM along with other problems. If the rheumantaologist want give you your result get your PCP to get them mine always gets them and I get a copy for my self with FM they have to rule out so much it sound as if you mine have CFS too with the infections you need virus testing. Take what ever help and do not be so strong you get sicker. We all need help meds vitamins and different doctors who help and believe. sharon
  5. rileyearl

    rileyearl New Member

    I found this message board in August and have learned so much about fm/cfs. And made some friends. It's awfully hard to meet people when you don't/can't go out much and here are lots of great people who already understand what I'm going through. I hope you will get as much joy and knowledge as I have.

    Some of your symptoms are similar to mine, but I've seen all of them on this board. It's the funniest thing. Someone will post a question about itching eyebrows or some other weird thing. Then about 10 people will answer right away, saying they've had it too.

    One other thing we have in common is the bipolar husband. I'm glad you're safely away from yours. Mine is firmly in the picture. Nothing as exciting as your ex. We do more depression than mania and it's boring, but not too crazy!

    I look forward to your posts! Take care!

    Francie
  6. hubby

    hubby New Member

    You will find a lot of answers, and if nothing else compassion of others in the same boat as you are. It helps to know.

    As somone said about posting about some symtom and then someone else will jump up and say yeah me too, and on from there. Do you think though that we as humans have some of these things from time to time, just because we are human, walk upright, and have muscles.

    I know I had twitches and cramps and things before I was diagnosed though of course I think I have had this all my life. My mother does too.

    I hope you will continue to visit, and don't think you sound like a hypochondriac, as we all have so many ailments, I am sure the Dr's that don't believe are by now calling us the hyper hypochondriac's.

    Don't' be afraid to gripe, good for the soul, as is crying, and mention whatever is on your mind, helps to know there are people that care.

    Have a good night
    Hubby
  7. EllenComstock

    EllenComstock New Member

    First of all, I want to welcome you here. This is a great place for support and information.

    Sounds like you should be doctor shopping. I've been to doctors like the one you have. After years of looking, I finally found a great FMS doctor. He does not feel threatened by a patient who is very active in their care and does their own reading and research. Like you, I diagnosed myself with FMS after years of being misdiagnosed and had a doctor confirm my diagnosis. I also diagnosed myself with endometriosis.

    I have the opposite thyroid problem-hypothyroid. Anyway, welcome and I hope you find this to be a warm and caring place as I have.

    Ellen
  8. Sheila1366

    Sheila1366 New Member

    I have gastritis too.I take protonix 40 mg.once a day.Gastrtis is very painful and can cause bleedig which being a nurse I'm sure you know.I hope you can get that under control.I remember being so sick on my stomach and this gnawing pain in my gut,it felt awful.Let us know how it goes.

    Sheila
  9. Yucca13

    Yucca13 Member

    I'm in So. Calif. also. Last spring we had a fire come very close to us. It was very scary - especially the thought of trying to move our cats. Hope they get them under control quickly.

    I wanted to comment on your mentioning stress and fibro. I had someone say to me the other day that every fibro person she has met seemed to be affected by stress. I would have to agree with that in a way.

    From coming to this forum for years, I've read about some of the very stressful problems that many of us have been through. (This is not to say that everyone doesn't have a certain amount of stress). I didn't think of it at the time, but I should have said that I believe that many people with this syndrome are highly sensitive people - to just about everything around them from tags on clothes to absorbing people's negative vibes to weather etc. etc.

    I know that relaxing is very difficult for me. Call it a hyperactive mind, I'm not sure. Maybe it is the manner in which some of us react to stress. I'm great in a crisis - it is later that my body falls apart. I've always had a "sensitive" back and had RSD also, but not everyone with fibro has back problems. I've racked my brain for commonalities in the group. One of the biggies is not getting into stage four sleep.

    I've had many tests for systemic problems and none of them come back with anything outstanding. So, then I ask myself, why I feel so much pain and fatigue if there is nothing clinically wrong? Big mystery. I hope that I live long enough so that a definite diagnosis of something being amiss in our makeup is discovered. Until then, I know it isn't all in my head!!!

    You mentioned feeling good on your trip. Two years ago we went to visit our son in Maui and I felt wonderful. Go figure? Maybe I need to move!
  10. Bailey-smom

    Bailey-smom New Member

    For the past 7 years I too treated all my ailments as separate from each other. When I was diagnosed about 3 weeks ago I was amazed at the symptoms of FM and how everything is connected.

    Nothing you mentioned sounded off the wall – I wish you luck in finding a good dr that will work with you to find what helps you best.

    Kelly
  11. lisadot

    lisadot New Member

    Thank you to everyone who responded to my post-you are all very kind. I have to admit, I can't figure out this message board LOL! I see "bumps", and I see reply buttons at the bottom of each reply, but then it just goes back to my original posts. Anyhow...

    I saw my gastro doc this morning, and he ordered an abdominal ultrasound. It should go well with the pelvic ultrasound (not a fun date) I need to have done due to the female problems I've been having. He ordered more blood work, mostly to check and see if my cholesterol is down from the new meds, and I guess to see if there are any other issues. He gave me those lovely cards to check for occult blood, and said he may need to do another endoscopy. Oh joy. So my mind works overtime again about the worst possible outcome.

    He also told me to take the Acidophillus three times a day for 2 weeks straight, and see how that goes. I'll give it a try, as I can't stand these yeast infections.

    I think I hate doctors, at least having to see them. I used to run away from them when was little. How on earth did I become a nurse?

    I did laugh about the reply about Maui and moving there. I'm sure it's the fact we leave our home/work lives BEHIND that makes us feel better. If I lived in Maui I'd probably develop problems there as well. I have a real problem relaxing. Just letting go. My ex capitalized on all my fears/weaknesses, and it still won't let go. I must find a way. I keep thinking about hypnosis. My perfectionism isn't a good thing. I'm too uptight! I'm a firstborn who was made too responsible at too young an age, and I'm afraid to say I have control issues. Caretaking can be a huge burden - if you aren't really careful. Hmmm...That's when I start worrying/wondering if I've done this to myself.

    Thankfully, the doc renewed my Ativan prescription. I'll need it to chill myself out while waiting for the tests/results.

    And If anyone can tell me a better way to reply to you folks, I'd be ever so thankful!

    lisadot