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GP appt and a week off! GP appt and a week off!

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  #1  
Unread 05-23-2003, 11:00 AM
GP appt and a week off!

Hi girls, well just finishing up a much needed week of holidays here.......we had a long weekend in Canada last week so I just sort of extended it and have a had a nice time just catching up on sleep (which I never seem to get enough of now) reading, seeing movies and whatever strikes my fancy

I saw my GP on Tues.....and told him how bad this joint pain has been getting and that my Mum has fibro and is concerned that I have it and he said "oh that's more muscle pain I don't think that's what you have" and sent me for xrays of my hands ( I asked why just my hands when my hips, knees, ankles feet and back hurt like heck too?) anyways after that he will think about the rheumy but said that by the time I got in this "flare" would be over......well what I want to know is what is causing the "flare"??

He also agreed to send me to the allergy clinic's nutritionist so I can find some foods that don't have sulphites in them that I can eat as almost everything is causing a reaction these days.....so it wasn't a total loss......but I can say this, being off work and getting all this rest has made me feel more like a human, I still have the bladder pain, I still have the joint pain but it's not near as bad......I guess in a perfect world where I could stay home I would feel better all the time right?

anyways the saga continues and i go back to work on Mon which I'm dreading already...........thanks for listening girls!!! 's!
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  #2  
Unread 05-23-2003, 07:52 PM
GP appt and a week off!

(((Gidge))),
Glad you enjoyed your Holidays Your PCP seems reluctant in giving you at least a chance to check for FMS...wonder why? I'm just wishing for some answers to your pains so you at least know what your up against!!
My Fibro pains are soo much better when I'm off a few days I myself just took 12 whole glorious weeks off due to *Multiple Chronic Pain Syndromes*
Like you, I never feel rested no matter how long I sleep
Good Luck on Mon ((Gidge)) hopefully it wont be to bad on you & your pain...((hugs))
  #3  
Unread 05-23-2003, 11:18 PM
GP appt and a week off!

Hi Gidge

So sorry to hear that you are having joint pain
I get it too, so I know how awful it can be. I recently went to a Rheumy Dr. for the first time with my concern that I may have fibro. He said he wants to see if I have Rheumatoid arthritis & check on some other things with a blood test. So we shall see what happens.
I wonder why your Dr. is having your hands x-ray'd. Do you get muscle pain too ? That seems to be prevalent in people with fibro. I get it really bad - especially in the morning. And just like Sheri, I never feel rested when I wake up.
When will these Drs. start listening to us ??!!! We certainly know our bodies better than they do ! I'll be praying that you find some answers & that you are feeling better soon.
I'm glad that you had some time for yourself - thats good !
Keep us updated & remember - we are always here for you

Susan
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  #4  
Unread 05-24-2003, 03:04 AM
GP appt and a week off!

((((((Gidge)))))))

One of these days docs will get compassionate and remember the oath they took and what it is supposed to stand for eh?

I am just begining to realise the implications of having fibro and what it may take to get someone to listen...sometimes I think when we go to our docs appts we should print our sisters posts of pain so that they would realise this is a real problem for a lot of us...I'm curious to know why he would call it a "flare" if it's NOT fibro??? Sheesh some docs...

Try to enjoy the rest of your weekend sweetie!!!!



Dawn
  #5  
Unread 05-24-2003, 08:34 AM
GP appt and a week off!

Right after I was 1st DX'd w/ Fibro, my Rheumy sent me to have my hands x-rayed. I had been (still do) experiencing severe joint pain in them, along w/ swelling & stiffness My Rhaynauds Syndrome was shortly found after that but that didnt explain my symptoms...they ended up being chaulked up to a combo of both the FMS & Rhaynauds. She was concerned about me having Scleroderma which can be a progressive, disabling condition. I'll take the Fibro anyday! Here are a few links on it, it seems to start w/ the sypmtoms I was experiencing.

Scleroderma Information:

http://www.seattlecca.org
http://www.medifocus.com
http://www.scleroderma.org/

Scleroderma Facts:
  Quote:
Scleroderma is ...
  • A chronic, autoimmune disease of the connective tissue generally classified as one of the rheumatic diseases. Also known as systemic sclerosis.
  • A disease in which the symptoms may either be visible, as when the skin is affected, or invisible, as when only internal organs are involved.
  • A highly-individualized disease. Its involvement may range from mild symptoms to life-threatening.

    Scleroderma is not...
  • Contagious.
  • Cancerous or considered malignant in any way.
  • Inherited, as a general rule

Who Has Scleroderma?

An estimated 300,000 persons in the United States have scleroderma.
Approximately 4 times more women than men develop the disease.

Causes of Scleroderma:

The exact cause or causes of scleroderma are unknown. It is known that the disease process in scleroderma involves an over-production of collagen.

Classifications of Scleroderma:

1. Localized Scleroderma
More common in children.
Usually found in only a few places on the skin or in the muscles.
Rarely, if ever, does localized scleroderma develop into the systemic form of the disease. 2. Systemic Sclerosis
May affect the connective tissue in many parts of the body, e.g. the skin, the esophagus, gastrointestinal tract, lungs, kidneys, heart and other internal organs. It may also affect blood vessels, muscles and joints._

Symptoms of Scleroderma:
May include one or more of the following:
  • Raynaud's Phenomenon (abnormal sensitivity to cold in the extremities).
  • **Swelling of the hands and feet.
  • Pain and stiffness of the joints.
  • Thickening of the skin.
  • Joint contractures.
  • Digestive system and gastrointestinal tract problems.
  • Sjogren's Syndrome (dry mucus membranes).
  • Oral, facial and dental problems.
  • Kidney, heart, and lung involvement.
  • Non-specific symptoms such as extreme fatigue, generalized weakness, weight loss, and vague aching of muscles, joints and bones.

How is Scleroderma Diagnosed?

The diagnostic process may require consultations with rheumatologists (arthritis specialists) and dermatologists (skin specialists) as well as blood studies and a variety of specialized tests depending upon which organs are affected. The treatment program varies depending on the type and severity of the symptoms. Diagnosis may be very difficult, particularly in the early stages, because many of the symptoms are common to, or may overlap with those of other diseases, especially other connective tissue diseases such as rheumatoid arthritis, lupus, and polymyositis.
http://www.scleroderma.org/fact.html
Carries some familiar symptoms huh?? But the thing is FMS mocks so many symptoms of a lot of these connective-tissue disorders..the reason for all the testing to rule these others out.
Fibro can be a very painful, sometimes serious condition. They say it isnt progressive, for some it's not, but for some it seems to be. I feel for me it has been....

Good Luck to each of you w/ this nasty DX, as well as those possibly facing it. Not a lot is known, so many Drs do not have many treatment options except what they find on the *INTERNET*....how scarey is that I have taken charge of keeping myself & Dr updated on the latest trials, info ect.. I advise each of you to do the same if your Dr in noy very well versed in this Syndrome. I have tons of research, articles info ect... on this, so if there is ever a specific concern any of you may have, pls let me know & I'll be glad to post what info I have found.
Good Luck to each of you, my friends
(((((((hugs))))))))
  #6  
Unread 05-24-2003, 10:58 AM
GP appt and a week off!

Hi girls thanks for all your replies and hugs.....much needed!!!

He suggested sending me for the xrays when we got talking about how we've tested my blood twice this year already for RA and Lupus (runs on both sides of my family) and also my Mum has osteoarthritis and Fibro as well as MS.........so I guess he was looking for any signs of the osteo or the RA......I don't know why he's digging his heels in about the rheumy ref.....he was just about to agree to it and then he said why don't we do the xrays first?

So I'm going to have to go back and ask again, I mean to me it's all got to be connected, the tiredness, the joint pain , the inability to concentrate, memory problems.....at least being off work has helped temporarily, sure by the end of each day I"m tired and my legs ache but nothing like when I'm working, when all I really want to do is cry by the time I get home.

I wonder how I'm going to get him to make the referral, what a ridiculous statement to make too, "by the time you get in to see the rheumatologist the flare will likely be over".....still doesn't explain why it's happening now does it??? Yet he will refer me to a sleep doc who I'm not entirely sure I need to see?

well at least I have today and tomorrow before I'm back at it
  #7  
Unread 05-24-2003, 11:09 AM
GP appt and a week off!

((((((Gidge))))))

I just don't understand why your doc won't give you the referral?!?!Expecially with your family history...and with your symptoms.

Do you know anyone that is seeing a good Rheumy in your area? If so, on your next appointment say "I've heard good things about this Dr...and he/she is the one that I want the referral too."

You know...come to think of it, I had a heck of a time getting my GP to send me to a Rheumay (Pre - hyst while I was taking Lupron). I actually got a name from the phone book, and then got my GP to refer me. One day I just opened up the phone book and looked up Fibromyalgia...and there it was in black and white. A FMS evaluation Centre. He turned out to be a quack...but it did get the ball rolling....

I'm glad you had a good week off my friend. Let us know your next step...

Oh, I almost forgot. A flare is a common term used in FM patients/symptoms. While you are in a flare it is the best time to see a specialist. But since it doesn't look like this is going to happen soon...make sure you journal these symptoms. It really helped me once I finally got in to see a Rheumy. I have not had a day without joint pain for several years...but when I am in a flare, I am usually bed ridden....as the pain is worse etc.

I've also seen a couple of sleep docs. Sometimes/Often people with FM will also have sleep disturbances...like sleep apnea. It's one of those things that docs do to rule out other problems...

S
  #8  
Unread 05-24-2003, 11:16 AM
GP appt and a week off!

((Gidge)),
I saw a Sleep Dr last summer who performed a Sleep study, after they had me all hooked up before going to sleep, I looked like someone out of a *Horror Movie* should've seen me walking the halls the next day..lol...
I think it is a good idea Gidge...many things can cause you too not sleep properly They have ways to fix it if it is something like Sleep Apnea ect...
My tests showed where I stopped breathing multiple times which would cause my sleep to be interuppted. Also, my Restless Legs syndrome causes me to awake. My main concern was (is) the amount of fatigue I experience daily. I am sooo tired & we wanted to make sure there wasnt something else causing it besides the FMS/CFS. I was dx'd w/ something very similiar to Narcolepsy, I just dont experience the sudden dreaming that occurs w/ this condition. I was put on a med that helps combat the fatigue, it helps, I see my Sleep Dr every 6 months for check-up's & call in for refills.
Pls keep us posted about this appt Gidge
((((hugs))))

BTW~I was admitted into the Sleep Study part of the hospital at 7 pm & was kept the following day until 4-5 pm where they ran multiple other tests that they would have me sleep- wake up, sleep- wake up..quite a day
  #9  
Unread 05-24-2003, 12:18 PM
GP appt and a week off!

thanks for the info girls

Sheri what was the med they gave you for the fatigue?? I sure would like something that would make me feel like I haven't been run over by a truck....literally this is the first week in a long time I haven't felt that way.......on the weekends when I'm off it seems I just start to feel like myself and it's time to go back

my thoughts were the same on the sleep doc if nothing else I thought he might be able to point my GP in the direction of Fibro I know I wake up alot, but I don't think it's because I stop breathing, my lower back hurts , my legs hurt......and eventually I have to get up to pee at about 3-4:00am.....but I always wake up stiff, it takes my feet and legs about 15mins to not feel all tight and cramped up when I get up....do you guys get that too?

Jude, hi ya!! I have no idea why he won't give me the referral....you're right considering the family history and the way I"ve been feeling ( I mean the joint pain has been going on for years it's just recently it's gotten beyond bearing is all) you'd think he'd be glad to refer me on??

I"m starting to get some overwhelming anxiety about going back to work already, I can feel it building.....it's not the job per se, it's how awful I feel halfway thru the day when my bladder and lower back starts to ache and then by afternoon the fatigue is getting bad and the legs have started aching.......I have expressed this to my doc a few times lately in hopes that he would give me something for it but he hasn't yet, and i don't even know what that would be but I can see by tomorrow night I"m going to be a wreck!!

thanks for listening girls it means the world!!
  #10  
Unread 05-24-2003, 12:56 PM
GP appt and a week off!

(((Gidge))),
Yes, on the a.m. stiffness..it takes all morning for it to get better. I set my alarm so I can take my a.m. meds 45 mins-1 hr before it's my actual wake-up time. If I dont I literally cant get out of bed..I'm stiff, my entire body aches soo bad, my back & pelvic pain are roaring...I dread waking up

As far as the meds for fatigue, I was started on Provigil but recently needed something stronger due to tolerance & was switched to Adderal. I've read where other CP Patients take this to help fight the side-effect, of Narcotic Therapy, sleepiness. It has helped a lot but I still need to up the mgs. My Sleep Dr & I are working on finding the *right* level...Hope this was of some help....(((hugs)))
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