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Old 03-16-2009, 11:56 AM   #1
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Newly diagnosed... Advice please...

Hello,
I have just been diagnosed with Fibromyalgia. I have a serious lower back injury and was at the specialisit's consulting rooms re: this when he gave me the "diagnosis"
I was very skeptical initially,I thought it was a mistake. I was just there to discuss treatment for my back injury. I have heard of it (Fibro) yet was not exactly aware of what it was ( and I come from a nursing back ground)
I guess the symptoms have been going on for a while, but I just thought I "was under the weather", not eating well, stressed, down in the dumps, and.... well, just falling apart! The health issues were there, yet I just dimissed them and thought they would go away, not get worse. I thought my back injury was really taking a toll and the aches and cramps were just refered pain.
Thankfully someone pointed out this site to me, b/c logging on here has been very helpful. It was a case "Bingo!" to the lists of symptoms....I was not going mad after all....( well, that is debatable)
The constant pain...( plus my back injury) the cramps, the muscle stiffness, the feeling that you are in a dream like state....and the constant almost soul destroying fatigue. I have trouble voiding, is this normal? I get fevers and night sweats and joint pain and sometimes my glands are inflamed. I loose my train of thought and have laspes in concentration...Can anyone relate to this? No one in my family understands, none of my friends...I did not even tell anyone when I was diagnosed for weeks b/c I felt somehow embarassed and guitly b/c in light of other diseases, it is not that bad (ie: cancer or a serious cardiac disease). It was just something else to whinge about and I already have a thyroid disorder ( thyroid gland does not work anymore, could this be related? The fact that I have an auto immune disease?) plus the back injury and the usual womens trouble with anemia..SO who am I to complain really? I may as well be put out to pasture like an old cow. A friend suggested logging to this sort of site and try to speak with others who would understand.Does it get better? What works for others? Are there foods to avoid? How do you cope with the constant pain and tiredness? I just want to be me again..I want to have the energy I used to have. More than anything...I want to be free of pain.
The specialist was vague about the details and I was, at that stage, still skeptical and did not ask many questions. He did manage to get me short listed at the pain management clinic and made a phone call for me to speed it up, I have an app in two weeks. Hopefully they will be able to help. In the meantime, does anyone have any tips? Diet changes? How do you cope with the constant pain? I am at a point where the pain meds just take the edge off and I am definately over using them. (taking too many) No one seems to really be able to empathise with how much it wears you down and depresses you being in chronich pain ALL the time. Oh, and the insomnia? Racing thoughts? Waking up b/c of the pain and cramps? Not sleeping properly b/c you feel like you are just nappping, not quite in a deep sleep, I do not seem to dream as much and when I wake up I feel like I have not slept at all... I have to avoid sleeping pills b/c I have been down that track with bad results...Any advice would be much appreciated..
cheers
Hellz

Last edited by hellz; 03-16-2009 at 02:01 PM. Reason: spelling ..brain drain

 
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Old 03-16-2009, 01:24 PM   #2
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Re: Newly diagnosed..Advice plese...

Hello Hellz...and welcome to the board !! You came to the right place.

Im newly diagnosed as well. I was diagnosed with Fibromyalgia at the end of Dec 2008. Im going through a real bad flare now. Its horrible.

My meds aren't working either. i am seeing my Rhumy tomorrow. I see him every 2 months and I go for bloods 1-week prior to the visitis. He seems to like to keep on top of all my blood work. I think he keeps looking for RA or something. He did find that I am Vitamin D Difienct.

I have been seing him since May 2008. I was seeing him for isses with my joints and my hands. They would have swelling issue and they would be so painful that I couldnt use them. Back in May he dx me with Brusitis, Trigger Finger and Tendonitis.

The symptoms you are describing are all to familure.
The Fibro Fog as they call it may get better. It has gotten better with me. I felt like I was on a different planet at times. I still have some issues with that but not like I used to.

The pain, well its hard. Like I said Im new to this too, so Im still learning and need to learn alot. I do take alot of hot baths to help with my muscles. I try to strtch and walk, but when Im this bad, well I can barely get out of bed. Right now Im in such pain just typing.

What meds dose the doctor have you on? Are you on vitamins?

You mentioned back issues. I have issues with my spine DDD, Arthritis, and had Fusion in my neck. I think, but Im not in the health feild, but I realy wonder if there is a connection.

Hellz, like I said you came to the right place !! The people here are great and you become very knowledgeable here. Its been a rough hall and still is for me, but I wouldnt of made it this far without them !!
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Old 03-16-2009, 02:10 PM   #3
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Re: Newly diagnosed..Advice plese...

Hi Hellz:

So nice to meet you! I send gentle hugs and best wishes your way. I believe you can find the answers to what will work for you if you are willing to do some research and dig around. It can be frustrating trying to find the right combination of things that will help you, but persistence will help you see this through. A couple of good books to read to help you in your search are "From Fatigued to Fantastic" by Teitlebaum and "What Your Doctor May Not Tell You About Fibromyalgia" by St. Amand. A lot of people try diet changes and supplements and have pretty good success, myself included.

The pain clinic you will visit will be a good start for you. Make a list of all your symptoms so you can keep your head straight during the appointment, however. Fibrofog is ridiculous to deal with, as you are finding out.

The best thing that worked for me was changing my diet to low carb, no caffeine. I eliminated sugar and all the lovely goodies that are made with the stuff. When I made this change in my diet, I had a lot more energy and the years of diarrhea that I suffered from stopped. I started exercising - low impact walking for instance. I can now do just about whatever I want in the gym (took time, though). I started on the "guafenisen protocol" which is described in the St. Amand book. I am now mostly pain free and the fatigue is manageable. And just so you can measure this by what you are currently experiencing, I was almost bed ridden when I started these different measures to improve my life.

I also believe you will find many kind-hearted people on this message board that will be able to help you in your search. You asked great questions!

Bye,
Kirstee

 
Old 03-16-2009, 08:51 PM   #4
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Re: Newly diagnosed..Advice plese...

Hello Kirstee...thank you so much for replying....How long have you had Fibro?
"fibrofog"LOL, I guess it not a laughing matter but I like the term b/c it makes sense, my brain is foggy....I guess that is the case with you and others?
I am already on a low GI diet b/c my son has juvinule diabtetes (insulin dep, type 1)
So we eat reaonably well, except when I am b/w shifts or busy..I am a big fan of caffeine, coffee, tea and the worse, Red Bull. (strongly caffinated energy drink) I have been drinking it too often obviously b/c I am so tired and I figure it will get through a long shift or an early start. So this is something to eliminate. Fourtunately I am not a sweet tooth, not really into chocolate and lollies etc.
So you go to Gym? You ovbiously keep fit...I used to go years ago, back when I had the energy, it would be nice to feel like that again. Slowly does it I guess. MY Dr told me to
excersise gently to start off with, does this sound right? Thanks again for the advice and responding to my post. Take care
Cheers
Helen

 
Old 03-16-2009, 09:34 PM   #5
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Re: Newly diagnosed..Advice plese...

Hi DjL. Thanks for replying to my post. It sounds like you are having a bad day today?
I know what you mean about hot baths..they help. I used to do alot of horse riding and down hill and X country skiing, after a good day on the slopes or a day of riding I would ache all over and nothing was better than a bath. I have not ridden it two years and have not been on the snow for longer, but I certainly feel like I have today so a hot bath is in order......I just went for a walk, a short and slow one...It is odd, to find yourself in pain during a simple stroll..Like, all over and now I feel like I have been hit by a truck. It is like it at work too, I am always sore b/c I am on my feet often, it is tough to drag my self through a shift.
My Dr has me on anti inflams and codeine, also oxicontin PRN for my back. They want to start me on some new range antidepressants which apparently help with this condition ( I am sure that you know what I am talking about)
Thanks again for your reply, this looks like a good site and it seems to be very informative and supportive.
cheers
Helen

 
Old 03-16-2009, 10:20 PM   #6
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Re: Newly diagnosed..Advice please...

I hope your experience with a pain clinic is much better than mine was several years ago.

He threw out dx of Fibro the fist min. he walked in the room, said it was a waste basket do. It had taken me two years to accept that was is wrong with me.

He put me on topamax, increased my soma and then morphine (which I didn't know until I filled the script. he talked about morphine pumps etc. But pretty much everything he said went over my head after he said fibro was not real.

I did write him a letter telling him I would not be back and he was nothing but a glorified legal drug pusher.

My idea of pain management was learning techniques to mange the pain not hard core drugs---which some days I think I am getting closer and closer too..

The hardest part of this is finding Dr's who believe you. Well and my family at first it took them a long time to see what was happening to me.

And now I am afraid my daughter is starting to have early signs. My sister also suffers from it and other things.

Anyway good luck with your Doc's
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Old 03-17-2009, 02:37 AM   #7
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Re: Newly diagnosed..Advice please...

Hey Donna,
Thanks for your reply...I am sorry to hear that your experience at the pain clinic was so negative and the the DR was so dismissive. Drug laws are very tight here in Australia and Dr's are very dubious about prescribing very strong narcotics. The pain clinic I am attending is more foucused on a holistic approach using meditation, relaxation, hydroptherapy, massasge and accupuncure etc: ( I am already getting accupunture for my back injury) That said, there are days when I would not knock back more pain releif...
H/w, I do not want to go down this track...My GP has me on oxycontin and that is being carefully monitored...He would certainly be annoyed if a DR there gave me nothing but drugs......YOu must have been so annoyed and frustated when the DR said that fibomyalgia is not real, what a tosser..I know there are GP's out there who are very dismissive of it, this is just from what I have heard....
I hope that your daughter is not getting it....I still am absorbing all this infomation and
don't know what to expect...It sounds like it is going to get worse before it gets better, is that they way it seems to un fold? I have only recently been diagnosed and the symtoms have been around for about three years..but got worse over the past 6 months. Please tell me that it gets better..Is this is good as it gets? I just want to feel normal again.......I am sure you know how this feels, wanting to have the old energy levels back, no brain fog and no pain and cramps....Do you avoid caffeine? I have been told that this helps and yet I can not go cold turkey but if it helps I will have to elimmminate it.
cheers
Hellz (Helen)

 
Old 03-17-2009, 03:46 PM   #8
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Re: Newly diagnosed..Advice plese...

Hi Hellz:

I've had FMS since my first pregnancy - 1973. Although the worst part didn't start until I had the accident with my horse in 1980 or so. I wandered from doc to doc, all of them clueless, all of them recommending PT, some of which worked, mostly didn't however. I finally found a doctor that specializes in FMS, and my world changed for the better at that point.

I do go to a gym, a am physically fit, but I wouldn't recommend anyone with FMS starting off like a maniac because severe backlash can occur. Start off with baby steps, like your doctor has wisely told you to do. Your body will tell you what is tolerable and what is not. It took me quite some time to be able to do the gym-thingy.

I really do see a problem with the amount of caffeine you are consuming. It is so tempting to toss back caffeine drinks because you are so physically tired from CFS. You put your body on a roller coaster when you drink caffeine, and if you are hypoglycemic like a lot of fibro victims, then you are setting yourself up for more trouble. How wonderful that you are eating properly - your body thanks you! Lots of fresh low-sugar fruit and veggies, fiber, etc.

Blessings,
Kirstee

 
Old 03-18-2009, 12:45 AM   #9
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Re: Newly diagnosed..Advice plese...

Hey Donna,
You have certainly had FBS for a long time......The fall off your horse must have been painful. It does s sound like trauma can induce a significant attack.
I have had the symptoms for a while but as I initally said, I thouhght it was my back injury causing the pain...just refered pain and cramps etc. i have two ain GP's and I saw one of them today who is very much a beleiver in FBS and said Ït is very real and painful
"You are in for a hard time, I won't lie to you....it can be an extremely painful condition"
He was as releived as I was with the diagnoisis, well, I mean, to finally find out what was wrong with me. He is a big supporter of Not relying on drugs to deal with pain and is very farmilar with the pain clinic I am going to see next week. The specialsit also is affilaited with this clinic and said to my GP that he is sure that a combination of pschology,medical,physio and OT will be their focus.He encouraged heat therapy and lost of warm baths and gentle excersise...So here is hoping for a positive experience with the pain man clinic.
Take care and hope to speak with you soon...BTW, I do agree I nedd to decrease my caffeine intake...Thanks for that advice....
cheers
Hellz ( Helen)

 
Old 03-18-2009, 12:56 PM   #10
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Re: Newly diagnosed..Advice please...

Well pain clinics here for the most part only do the narcotics --- you have to sign a bunch of paper work saying you will only see that dr etc and they lock the doors behind you----makes you feel you are a drug addict--and there are still soooo many Dr's that don't believe in Fibro.

I take PT when my back is really bad and have a script for a TENS unit--I had one a couple years ago (but it was not on my insurance so had to send it back) it sure helped.

As far as good as it gets. I think Fibrosis here to stay---and we have to learn what we can and can not do---try to make things easier---

I don't drink as much caffeine as I used to, I can't drink coffee much because it causes more problems with the acid reflux---I will drink Ice tea but water with some cranberry juice in it is my drink

my worse months are DEC and JAN and JUNE - Aug---so extreme heat and cold are my enemies. And humidity.

But really we have had a mild winter here, but I still don't have the energy to get just normal household things done, let alone the bigger projects I want to do.

hope all the things you try work out for you---everyone is different is what they can handle.
hugs
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Old 03-18-2009, 03:37 PM   #11
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Re: Newly diagnosed... Advice please...

Hi, Helen. Just wanted to say welcome and, of course, get my two cents in (or 5 cents, as the case may be…). You sure ask a lot of really good questions! Keep it up. I’m glad someone steered you here.

Quote:
initially,I thought it was a mistake. I was just there to discuss treatment for my back injury. I have heard of it (Fibro) yet was not exactly aware of what it was ( and I come from a nursing back ground)
Me too, sweetie. Still wonder if there’s been some mistake (after over a decade… what can I say… I guess I’m just stubborn!).

Quote:
… the constant almost soul destroying fatigue. I have trouble voiding, is this normal? I get fevers and night sweats and joint pain and sometimes my glands are inflamed. I loose my train of thought and have laspes in concentration...Can anyone relate to this?
And how! I never knew just how impactful it was to ALWAYS be exhausted (even on rising…) and HURT everywhere. My hubby and I now try to make a little joke over which part of me does NOT hurt (yesterday’s answer: ear ). I don’t know about the voiding… since I’m over 40 and had a hysterectomy, the docs say the bladder difficulties are related to my age or the hysterectomy.

Quote:
No one in my family understands, none of my friends...I did not even tell anyone when I was diagnosed for weeks b/c I felt somehow embarassed and guitly b/c in light of other diseases, it is not that bad (ie: cancer or a serious cardiac disease). It was just something else to whinge about and I already have a thyroid disorder ( thyroid gland does not work anymore, could this be related? The fact that I have an auto immune disease?) plus the back injury and the usual womens trouble with anemia..SO who am I to complain really? I may as well be put out to pasture like an old cow.
I think this is one of the most hurtful things about fibro. The pain and exhaustion are bad enough, but when coupled with a lack of support and/or doubt amongst those we love – family or friend – it makes it even worse. One of my favorite sayings: “There is no circumstance or situation that is so dire that it cannot be made worse by a lack of understanding.” KWIM? And fibro surely fits this saying well. And, imo, why should any of us “Fibromyalgians” feel guilty or apologetic for having fibro (as opposed to something terminal). Now, don’t get me wrong – I feel for people suffering from more “serious” diseases and wish that they didn’t have to go through all that! BUT, I also think that one of the reasons that we do feel for these people is because they are SUFFERING… and isn’t that what people who have fibro do every day of our lives?! Suffer?? And will have to live and deal with every day… for the rest of our lives… no end in sight and no really effective treatment available? In my (admittedly) limited experience, terminally ill patients at least get adequate pain control. And, contrary to the way it probably sounds , I really am sympathetic to others pain, but I don’t appreciate being sloughed off or treated as a “second class” person just because my illness can’t be seen. Sorry. Didn’t mean to go off in a rant! Can you tell this is one of my pet peeves (of which I have a more than a few! )
And as for the thyroid disorder, please reassure me that you’ve done some research and have optimal care for your thyroid. I’m now on a continuing journey to try to make sure my thyroid (I’m hypoT) is taken care of adequately, so I can then tackle my fibro issues. I want to live the FULLEST I can, if you know what I’m saying... which for me means addressing all of my issues...
Quote:
Does it get better? What works for others? Are there foods to avoid? How do you cope with the constant pain and tiredness? I just want to be me again..I want to have the energy I used to have. More than anything...I want to be free of pain.
For me, the fibro has come in waves – at first, short waves of “flares” then longer periods of little/no pain… at least, little enough pain so that I didn’t have to take any more meds for it! Now I find that it’s longer waves of “flares” and shorter times in between. But everyone is different and one of the things I’ve learned on this board is that there is, at least for some, a “magic” combination of therapies that can keep the fibro in check. That’s certainly what I’m looking for! I think that you’re trying everything to find this “magic” combo and I’m sure you’ll be successful… just don’t give up, dear!
Quote:

Oh, and the insomnia? Racing thoughts? Waking up b/c of the pain and cramps? Not sleeping properly b/c you feel like you are just nappping, not quite in a deep sleep, I do not seem to dream as much and when I wake up I feel like I have not slept at all... I have to avoid sleeping pills b/c I have been down that track with bad results...Any advice would be much appreciated..
I wish I could tell you something better about this, but can only tell my story. I struggle with insomnia, in spite of sleep meds. And it always feels like you say. I had a medical person once tell me that certain sleep meds, while they help you get to sleep and maybe stay asleep, don’t ever get you into REM sleep – the sleep that restores your body. Don’t know if that’s true, but this is part of the fibro. I think others have given you great advice, so all I can say is do whatever you believe will allow both your mind and body to rest. For some, that means physical exertion 3-4 hours before bed, for others it means something like meditation… we’re all wired differently, dear, so this is part of the journey.

Just a few more notes and I’m done (finally)!! I know you’ve already said you’re going to do this, but let me encourage you once more to severely limit, if not eliminate, the caffeine. It can make the fibro symptoms worse (at least it does for me) and overworks your adrenal glands… which, if you have a thyroid disorder, are probably already overworked as it is.

Better close this “epistle” now before I think of something else to say. I’ve been contemplating what to say to you for a couple of days and I hope I didn’t get too overboard. I wish you all the best!! And a pain-free (or at least reduced-pain ) day!
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