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acornfl 09-02-2005 02:21 PM

Newly diagnosed Need help( warning may get long)
 
I will start with a little history, I posted a few weeks ago before I had an actual doctor diagnose me( my aunt suffers from FM and is the one that told me I most likely have it too)
I had been going to doctors for 4 years with constant pain and pretty much slept all day and could not figure out why, at a b-day party for my son my Aunt was over and we got to talking and thats when she told me to talk to my doc and start testing for Fm. I was diagnosed last Friday and the doctor has given me Ibuprofen 800mg, Loritab 5mg and Mylan sleeping pills.
My questions are mainley about the meds, Is this normal treatment? I don't really like or trust this doc too awful much, but he was the only available with my insurance coverage.
I still have lots of pain even after the Loritab, the pain meds is what gives me the energy but isnt to effective on my pain as it feels mostly in my joints and bones. Is there a differant medication I should talk with my doctor about? I hate going to the doctors with no clue what to ask or be concerned with, so I'm looking for a little insight and advice. Thanks in advance!!

Glojer 09-02-2005 05:32 PM

Re: Newly diagnosed Need help( warning may get long)
 
Any chance you could see a rhuematologist? Be sure you have your thyroid checked, your tsh should be between 1 and 3. Don't let them say it is fine or within normal range if it is above that. Ask for a copy of your blood work and make them prove the results (legally they are yours). If your thyroid is fine you can then start helping yourself with meds and vitamins and any alternative treatments you may like.

What I take for my fibro is ambien 10mgs (sleep aid) tizanidine 6mgs (muscle relaxer) and for better sleep I add 25mgs benadryl. I take all these at bedtime, a good nights sleep is imperative to me. I also have 800mg ibuprophen, but that does not help the pain of fibro much and I only use it occasionally for back problems.

I also have lupus joint pain and I take 4mgs prednisone and that is what really helps my joint pain. Some others may be able to help with different pain meds. I suggested the rhuematologist to treat your fibro or perhaps a pain specialist might help.

keep us posted

Glojer

ps. I forgot to explain that if your thyroid is not working properly that can cause joint pain and fatigue and a whole host of other problems, including wanting to sleep or being tired all the time. Just because you want to sleep does not mean you are getting good sleep. Dealing with my thyroid while dealing with fibro has been a great help to me. Just wanted to suggest it to you.

DecLady 09-03-2005 05:13 AM

Re: Newly diagnosed Need help( warning may get long)
 
Because there is no drugs specifically for FMS at this point, I think doctors have (if they believe in it at all) their own preferred way of dealing with a newly diagnosed patient. IF you find what your doc gave you isn't working, make sure you tell him/her. If you are lucky they will work with you to find something that does help you feel better. I was dx'd by my GP, who does believe in fibro...but like many docs not sure what to do about it! I brought up Ultram/Ultracet which at that time was FDA approved for FMS. Well, he and his partner both agreed they did not like the side effects and risks with that drug, and they preferred that I take vicoden. That surprised me...but at that point I was trusting their judgement. And, it helped me! Which was what I was hoping for! Now 3 years have passed...and I still take vicoden for pain, unfortunately for me, there is pain nearly every day. But, he is still comfortable with my level of use. Now he has said, that when this dosage ( 500mg- 4 times daily as needed) no longer works..he will want me to go to a pain clinic. I am not sure how I feel about THAT yet!! But, it is hard to know what to do when you have this illness. There are so many protocols out there that promise relief. But,often , you try them..and still have pain and fatigue...even all the different meds that can get prescribed...work only for some people...there is not one solution available at this point.
I know for myself...if I were put on your particular set of drugs..I would still be in pain. So, I am not so surprised that you are as well. As I started out saying...if it isn't working...speak up...because you will find that YOU are your own best advocate thru this maze of accurate AND conflicting information, drugs, and other solutions.
Good luck to you!

acornfl 09-03-2005 11:26 AM

Re: Newly diagnosed Need help( warning may get long)
 
Thanks for the input, I have a doc appt wendsday so I will talk to my doctor more then.
I was perscribed at one point in my 4 years of trying to figure out why I was always in pain Vicaprophen(sp?) and a muscle relaxer and that did absolute wonders for my pain at the time, so maybe I will ask about that.
I have already been through all the blood work and tyroid stuff and it is all normal, so my doctor felt comfortable in the fact that it was most likely Fm as it is already in my family also.
The Loritab I really like because it gives me energy( why I don't know) but I can do my normal everyday activities and not just feel like staying in bed all day, it just stinks that it dosnt help my pain. anyaway thanks for the help and input and I will be sure to keep everyone posted as I'm sure I will be here alot looking for answers and support!

Jenetti 09-04-2005 08:32 AM

Re: Newly diagnosed Need help( warning may get long)
 
hi, i take the following meds:
cymbalta- in the morning (supposedly for energy, hmm)
lortab- 7.5 4-5 x a day, and the 10/500 when i need that, doc leaves it up to me to decide when i need either one.
soma (carisprodol) - muscle relaxer , also 4-5 x a day, taken with the lortab
elavil- 25 mgs at night for a good nights sleep, take it around 8:30 pm
also as of recently have been diagnosed with thyroid nodules and an enlarged thyroid, so am taking 25 mgs of synthroid, think shes raising that up tho in a couple of weeks when i go back for my followup on the thyroid.
also to be taken as needed: lorazapam, for anxiety attacks which i havent had to take since being on the synthroid even tho ive only been on syn. for a few weeks.
plus i get a vitamin b shot every two weeks
i also take vitamin supplements and calcium, iron (since im also anemic) plus a whole range of other things such as milk thistle for liver cleansing, and so forth.
wow, no wonder i hardly eat, stuffing myself with pills all day long lol

goldenwings 09-04-2005 08:43 AM

Re: Newly diagnosed Need help( warning may get long)
 
Dearest Glojer,

Would you mind helping me please? You talk about thyroid problems causing you fatigue and so on. A light went on last night when I read your post. OK I have my battle every day, as do you,with lupus and fibro and fatigue, but the thing is I am sure my husband should be tested for this.

He is totally exhausted all of the time. He gets out of bed and feels like he has never even been to sleep, he is so lethargic, no get up and go - it's already gone for him poor lamb. He is totally yukky all of the time, everything is an effort for him. Lots more things, but you can get the gist. He has had lots of standard bloodwork done, and they have come back no problems found. He has had a consultation with an eminent chappy and is waiting now for an MRI of his brain. He has had testing done for ear, nose and throat problems which are fairly normal. Lots of things.

Can you explain things for me Glojer in connection with thryoid problems? Is hyper overactive and hypo underactive? What does this mean? I know it is a lot to ask so I will wait until you feel able to do it. Thank you so much.

Take care.

goldenwings :angel:

stick2013 09-04-2005 05:35 PM

Re: Newly diagnosed Need help( warning may get long)
 
Hi, The important thing is to be comfortable with your Dr. If you aren't, find another one. I now see a nurse practioner who has Lupus, so she understands the pain, confussion, depression, sleeplessness, and everything else that you have with Fibro.
I have tried every anti depressant on the market without any help, until Cymbalta. I take 30mgs at night. I also take 25mgs of Trazadone for sleep(can take up to 150mgs if I need it), Soma(muscle relaxer)Vicodone,or Ultram for pain if it's bad, but normaly I just need darvocet. I also take 500mgs of Calcium, and 500mgs of Magnesium for help with the muscles, and super B Complex. Those were recommended by my Rhuematologist.

Anything that will help, I will try. My biggest problem(as is with most who suffer with FM) is lack of quality sleep.

I wish all of you luck, and a pain free day....... :)

goldenwings 09-05-2005 04:39 PM

Re: Newly diagnosed Need help( warning may get long)
 
Dear Glojer,

Any way you could help me with the thyroid question please? I know I only asked yesterday, but I am such a hurry bunny that I thought I'd try again. Is it a blood test? I now I can look it up on the internet, but I would prefer to hear things from you as you have this problem. Sorry to be a pain in the bottom on this, but I want to arrange for my husband to have it don as soon as I can. I personally feel it will answer a lot of questions for him..

Thanks,

goldenwings :angel:

Glojer 09-05-2005 05:29 PM

Re: Newly diagnosed Need help( warning may get long)
 
Dear Goldenwings, you are never a pain in the bottom all the help you give us I am only to happy to help you and compassionman. Sorry to take so long to get back to you, yesterday was my grandsons 3rd birthday party and I didn't get to the computer at all.

Anyway here goes, yes the thyroid test is a blood test called a TSH (thyroid stimulating hormone) test. They also can and should do Free T3 and Free T4 tests (don't know exactly what they stand for) The normal range for tsh is 0.05 to 5.5, but most women and I would venture most men feel better with the thyroid or tsh count around 1 to 3. The FT3 and FT4 should be in the upper 70% of the range and the range of course depends on the lab used. When you are hypothyroid that means your underactive (I think I have that right) or that your thyroid gland is not producing enough tsh and you are usually very tired always want to lay down and sleep, no energy or get up and go (mine went a long time ago!) and weight becomes an issue. Usually gaining weight quickly without eating in excess and efforts to take weight off are unsuccessful. Thyroid problems can also cause joint pain, hair loss, extreme fatigue, being either too cold or too hot, sleeping problems there is quite a long list I'm just trying to take this from the top of my head.

OK for hyperactive thyroid (which I am not) your tsh is usually low as in 0.01 or something ridiculous and is considered overactive. People like this usually are more nervous and full of hyper energy and lose weight without trying, they have a speeded up metabolism. They can also have sleeping problems, hair loss etc.

Usually an endocrinologist is the person to go to for thyroid problems. Here the American College of Endocrinology has set the standard for TSH at between 1 and 3 even though many labs and docs still use the 0.5 - 5.5 range. Last visit to my Endo, in April, she told me they are thinking of setting the standard back to 1-5 which would be a shame.

Just another thought, does compassion man have a sleep problem such as snoring or doing that stop breathing thing while he sleeps? My husband has been having the snoring thing going since he gained some extra pounds and that effected his sleep. Even though he seems to have put in a full 8hrs. he still wakes up unrefreshed. He had the sleep study and is suppose to be using a CPAP machine but can't get the hang of it yet.

I sure hope I have helped some. If compassionman just has no energy whatsoever I think he should at least find out about the thyroid. I can tell you staying on top of my thyroid with medication has really helped me, I even take extra sometime and I have to say it helps more than you can imagine. The biggest problem is getting the right diagnosis and then getting the proper dose of meds. You usually start low and work up to the right dose, but that takes time cause it takes sometime 4-6 weeks for the meds to work.

Well I guess I have rattled on here, one more thing there is a thyroid board and they have some good info if you would like to stop in there. I think patience50 from the lupus board has also been on the thyroid board. I usually stop in once in a while to check up on things but don't post. I will check in again on Tues. morning if you have more questions I will try to be here for you.

Glojer

goldenwings 09-06-2005 05:11 AM

Re: Newly diagnosed Need help( warning may get long)
 
Dear Glojer,

Thank you so much for the information my friend. Yes, Ii do think from how you have explained it, that thyroid problems are a distinct possibility with hypothyroid being the culprit. It read rather like a decsription of my husband in parts.

Yes, he has problems with snoring on occasions, but in the past has had surgery - UVPPP - but he has gone back to snoring, which I am convinced is because of his extreme tiredness and so on.

I am going to research into the information and in the meantime hopefully put 2 and 2 together for me as well !!

Thank you so much Glojer, I will let my husband read this when I next see him for more than 5 minutes !! You have been, as usual, a great help.

Take care.

goldnwings :angel:

goldenwings 09-06-2005 05:13 AM

Re: Newly diagnosed Need help( warning may get long)
 
Dear Glojer,

Thank you so much for the information my friend. Yes, I do think from how you have explained it, that thyroid problems are a distinct possibility with hypothyroid being the culprit. It read rather like a decsription of my husband in parts.

Yes, he has problems with snoring on occasions, but in the past has had surgery - UVPPP - but he has gone back to snoring, which I am convinced is because of his extreme tiredness and so on.

I am going to research into the information and in the meantime hopefully put 2 and 2 together for me as well !!

Thank you so much Glojer, I will let my husband read this when I next see him for more than 5 minutes !! You have been, as usual, a great help.

Take care.

goldenwings :angel:

acornfl 09-06-2005 06:20 AM

Re: Newly diagnosed Need help( warning may get long)
 
I am going to have to ask my doctor to upgrade my loritab to the 7.5's and 10's, cause what I have now did not help at all last night when I was crying cause my knees and wrist hurt soo horrible bad, I was in so much pain even my skin was burning, my doctor seems pretty understanding and seems to listen to me when I tell him what I want to try or what I think will work, I'm just having a hard time with this doc cause I had to change from the Doctor I have seen since I was 8 to this new guy that is really hard to understand. I'm gonna try and give him some time and a chance

goldenwings 09-06-2005 06:26 AM

Re: Newly diagnosed Need help( warning may get long)
 
Hello acron,

I really feel for you. This never ending pain and uncertainty sure plays with our minds. You seem to have an understanding of how some doctors - not all I know - will do their best for us and listen to us and accept that only we know how we feel. I think it is the best thing to do to give the new doctor a chance.

I do hope you are able to get some relief very soon.

Take care

goldenwings :angel:

Glojer 09-06-2005 07:28 AM

Re: Newly diagnosed Need help( warning may get long)
 
Golden, I am glad to be of help to you. You know I preach thyroid a lot, but I don't think it matters how much meds you take for pain or sleep or whatever if your thyroid is off, your whole body is off. At least that is the way it has been for me. Thyroid function or disfunction is an auto immune problem and I know you know all about auto immune problems.

Thyroid problems can also be an inherited thing, my mother also had thyroid problems but back then they gave her some pills and when she finished them they just said she was ok. Didn't know she should take them her whole life.

Hashmoto's disease is what it is called or Hashmoto's Thyroiditis if that helps in your research. Getting thyroid problems diagnosed, is just as hard as getting fibro or lupus diagnosed. I was very lucky I saw and endo when my thyroid was at 4.9. My gp had put me on .50mcg of synthroid when my blood test for tsh came back at 5.6 and I was complaining so much about fatigue and pain. That only brought my tsh down to 4.9 and he said that was fine since it was in range (0.50-5.5), that's what happens. I then went to an endo and I almost cried in her office when she just said "oh we have to get that tsh lower". I didn't have to argue or struggle and it has been two years we have been uping the synthroid and I think I have found the right dose 112mcg.

Just wanted to give you a little background golden so you and compassionman would be prepared for what may lay ahead. I'm not worried though I know you can handle the docs! Please keep me posted and I hope he feels better soon.

Glojer


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