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    Old 06-06-2005, 07:27 PM   #1
    spriggy
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    what kind of doctor should you see?

    My gp sent me to a neurologist because he was concerned I had MS or something like that.

    The neurologist diagnosed me with Fibromyalgia.

    So now where do I go??


    Is a rheumatologist the right doctor/specialist for fibromyalgia? I am having serious joint pain and stiffness right now- especially in the mornings.

    My regular GP has given me hydrocodone and Piroxicam (an anti inflammatory) but for the most part, it's not helping. I don't like taking the hydrocodone unless I just have to- it makes me a bit drug headed and I have two children to care for.

    Anyone know of a good medicine that won't leave you feeling groggy? I had a friend with lupus who says she wears some sort of patch?

    Thanks for any info. My regular gp is in Africa for a month on a mission trip and I'm wondering if I should be getting a referral to another doctor like a rheumy?

     
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    Old 06-06-2005, 09:02 PM   #2
    fibromomof5
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    Re: what kind of doctor should you see?

    Hello, I also have fibro. I am a mother of 5<4 mine + 1 niece in my care> My neuro also dxed me<they thought it was ms too> but I went to a rheummy for a second opinion. The rheummy i saw was very distant and seemed only to want to increase my dosages on prescriptions taht weren't helping> I just hate the groggy feeling. I will be seeing a pain managment specialist because of my need for pain control, and need to address my sleep issues. i will let you know if it helps. I am also going to have a pt who does home care, so i won't have to leave. I also have an appintment with a nutritionist so i gain address any deficiencies in my diet<plus I need to lose weight> I hope this has helped, but please keep us posted. Have agood night, Jennifer

     
    Old 06-06-2005, 09:29 PM   #3
    tkgoodspirit
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    Re: what kind of doctor should you see?

    Hi spriggy!

    Welcome to the FM boards. I think you'll find a lot of good support and great info here. We are a good bunch.

    I'm sorry to hear about your recent dx of FM, but now at least you know what you have and can begin the road to finding the right treatment for you. I must say, that every FM patient is different and your treatment will be different than mine, or someone elses. You do not want a doctor who treats all his/her FM patients the same. I changed Rheumy's because of that very thing.

    Question? You mentioned joint pain and stiffness. Did your Neuro run an ANA or Lupus test on you? Lupus is an inflammatory disease that involves joint stiffness and pain. Just wondering. Lupus symptoms and FM symptoms are similar, though Lupus is an autoimmune disorder that affects some of your major organs. If you had to choose between the two, you'd choose FM.

    Yes, a Rheumy is normally the specialist who treats FM. Your GP should refer you to one, or the Neuro you saw can refer you to one. I want to tell you right now, if you do not like your Rheumy for any reason what so ever, get a different one. This is the doctor you will be seeing the most, this is the doc whom will be prescribing your meds, so you want one you feel comfortable with. A lot of us here have changed Rheumies more than once, that is not uncommon. There are a lot of Rhuematologists out there, so don't be afraid to see a different one if you aren't happy with the treatment or the bedside manner of the current one you see. You will need to be referred to a Rheumy, even if you switch to a different Rheumy.

    You say your GP is in Africa for a month? Well, the Neurologist who dx'd you with FM should be able to refer you. You can also search your insurance company's website for a list of all the Rheumy's that take your insurance and see if you can't find out anything about them. Some have websites. You can call the hospital they are affiliated with and ask the Rheumatology Dept. if any of their docs "specialize" in FM.

    If the Neuro won't refer you out, which I doubt that they won't, whoever is taking your GP's patients can refer you. You'll have to make an appt. and get the medical records from your Neuro's office visit so it shows your dx of FM. The Neuro's office should send them over to your GP's office with no problem. Oh and FYI, I always get copies of any doctor's notes from office visits, copies of treatments and procedures, just so that you have copies that you can keep at home in a file. You can use them to give to any doctor you see. It's easier than relying on the doctor's staff to send your records, things get lost, or don't get sent at all. Remember you are dealing with the medical proffession! LOL Just tell the receptionist when you check in or when you check out that you would like a copy of that day's doctor's notes. You'll just have to sign a release form and you may have to pay a dollar per page, but I have yet to pay for any. Just start a little file named FM, and keep copies of doctor's notes, MRI's and what have you in it. I have learned over time, that sometimes what a doctor tells you during your visit doesn't end up in the notes!

    You say your GP prescribed you Lortab/Hydrocodone? And the anti-inflammatory? That is good really. Most docs will NOT prescribe pain pills for FM at all! Most Rheumy's refuse to prescribe any kind of narcotic for the pain of FM. Do you also have arthritis? Have you had XRays, or an MRI done? Your GP probably prescribed you the anti-inflammatory because you complained of joint pain and stiffness. FM is NOT an inflammatory condition. It is a connective tissue disorder of the musculalskelatal system. Anti-inflammatory meds are sometimes prescribed for FM but usually do not help much, as the condition isn't inflammatory. You will not suffer from swelling, so an anti-inflammatory doesn't really help. Unless you have degenerative arthritis, or inflammatory arthritis. Or another type of condition like Lupus that IS an inflammatory condition.

    The pain of FM can FEEL like it's inflammation, but it's not. And normally it doesn't affect your joints. This is confusing cuz the pain from FM is so widespread it can seem like your joints are stiff. If you feel your joints are stiff and that the anti-inflammatory med is helping you, see if you can get an XRay to check for arthritis. Which joints are bothering you? It is normal to feel stiff with FM, because your muscle tissue is irritated. The reason for how FM causes pain is very complex, and I can suggest that you page through the threads here on the FM board and look for titles that talk about any kind of research, or causes of specific pain, or read the ones where people are asking specific questions about certain symptoms they are having. I began a thread not too long ago that talks about FM being classified as a DISEASE instead of a SYNDROME. In this thread it explains how pain develops and how it is transmitted throughout our CNS. There are also threads that discuss the chemical imbalance of certain neurotransmitters in our brain and how they react to pain, as opposed to how a "normal" persons brain fights off the pain being transmitted. The research was done using an MRI on a FM'er and a Non-FM'er.

    It's likely that when you find a Rheumy to treat you that they will not continue the pain meds. Take a look at the thread that asks about Anti-Depressants helping people with FM. That is normally one of the first meds that a Rheumy will prescribe for FM. I can explain that later to you if you want, and you can find out more about that from certain threads here on the board. Another med you will most likely be prescribed is something for sleep. It is important you get "restorative" sleep at night. At least 4 hours of RESTORATIVE sleep is the goal, ontop of the few hours of light sleep. It's the stage 4 sleep that people with FM aren't getting, we aren't really sleeping deep enough for long enough. Sleep is one of the major keys in maintaining FM and keeping your pain at a minimum. Exercise is another "biggie" for Rheumy's, they will suggest PT, Aqua Therapy (which is wonderful). But it is true that regular exercise can keep your pain in check. Members on the board have posted many sucess stories about how they felt better after starting a regular exercise routine. Nothing major, no jumping up and down, or weight lifting 200 pounds over your head! Yoga, recumbant bike, walking, light weight training, and basic strenght training are good. Also stretching is very important. It is very important to keep moving and keep your muscles stretched, so that you don't develop "trigger points". These are inflammation. And they hurt like the dickens. Read the thread titled: The difference between Trigger Points and Tender Points".

    As far as pain meds go, and your anti-inflammatory meds not seeming to help you much. How long have you been using them? Depending on the med, sometimes it takes 4-8 weeks before you feel the benefits. Also this will allow enough time to notice any side effects that are bothering you, and you can be switched to some other med. Anti-Depressants are the most "tricky" meds, as everyone seems to react differntly to them. They are called SSRI's. SELECTIVE SERONTONIN REUPTAKE INHIBITORS. I have my own opinions about the use of these meds for FM, but I won't get on my soap box now, since you didn't ask! LOL Just know that if your Rheumy suggest an anti-D for you, they are NOT suggesting you are depressed. The anti-D's are used for the Reuptake of Serotonin. Serotonin is the chemical in our brains that produce endorphines which increases energy and also eliminates the fatigue of FM. That is why Anti-D's are used to treat FM. There are other forms of Anti-D's, some contain, neoepenepherine, or dopemine, as well, all working the same way, to increase energy and elimate fatigue, which supposedly will decrease FM pain. You may try a couple different Anti-D's before you find one that "fits" you. Neurontin is another med that blocks the neurotransmitters that transmit pain in our CNS. This med works for some, but not for all. Any pain med that a Rheumy "may" prescribe would most likely be Ultram (Tramadol/generic). When first dx'd with FM, this med is usually pretty effective. It is a pain med, and it is considered "non" narcotic, tho it does contain a very very mild narcotic component, the side effects are far and few between with this med for most folks.

    As for the "loopiness" you feel from the Lortab. This will pass in a couple weeks. When I first used it, I had never been on any pain pills and it felt like I had drank a few beers, until I got used to it. These are short acting meds, that have a very short "half-life" meaning they don't stay in your system but for a few hours, and you usually build up a very quick tolerence depending on the serverity of your pain. Lortab is probably one of the "mildest" forms of narcotics that treat pain.

    CONTINUED IN NEXT POST: Sorry, this is a loooongie! My main flaw: excessive gabbiness!

    Last edited by tkgoodspirit; 06-06-2005 at 09:48 PM.

     
    Old 06-06-2005, 09:31 PM   #4
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    Re: what kind of doctor should you see?

    CONTINUED FROM PREVIOUS POST:

    Spriggy:
    I just want to say that you, nor will any of us with chronic pain, ever be 100% pain free. When someone is in Pain Management for treatment, the goal of the doc is to at least reach 50% relief. If you get more than 50% relief, you are doing great. Stinks, I know.
    You asked about a "patch" for pain. Well, if you are meaning a patch that lasts longer to where you aren't taking a pill every few hours, there is a Transdermal (meaning it passes through the skin) patch that is called Fentynal. It is one of the most potent pain killers/narcotics out there. And usually it isn't given until all other modalities of pain treatment have been exhausted. This med will usually only be prescribed by a Pain Management doctor. It is highly regulated by the DEA. As are a lot of narcotics these days. The DEA is really cracking down on what they call Schedule II narcotics.

    This patch is called Duragesic/Fentynal. It is so potent it is not give in mgs, it is given in mcg's, or micro milligrams. Something like 10 times the medication is distributed through these patches than an oral med. It comes in 25, 50, 75, 100,125,150,175,200,225,250,275,and 300 as far as dosing amounts. It was originally developed for terminal cancer patients. It is meant for people who have chronic pain. Not acute pain. It is a long acting med. It is prescribed to be changed every 72 hours. Some folks change it every 48 hours, because it just doens't last the whole 72 hours. I imagine at a higher does, it would last 72 hours, but usually docs would rather you change it more often than use a higher dose. The only problem with these long acting meds, Methadone and Oxycontin are other LA meds, is that you usually experience breakthrough pain. That is pain that "breaks through" and spikes for more than a couple hours between doses of your LA med. So you end up using a breakthrough med, like Lortab, to use when you feel a spike in pain that is causing you such discomfort you lose your ability to function "normally". Breakthrough meds are meant to help keep your pain at a steady level. People have a tendency to abuse b/t meds, unfortunately. If your LA med is at the proper dose, then you should only be using your b/t med on an as needed basis. So you see why these LA meds would not normally be given out to a FM patient until they have tried all other types of pain killer regimines. I use the Duragesic patch, 75mcg with Oxycodone 30mg 2 X daily for b/t pain. But I have severe lower back and nerve pain.

    There is a Lidoderm Patch that has Lidocaine in it. It is a topical transdermal "local" pain med. It only works on the pain it is placed over. It is best for trigger points, sprains, or pulled muscles, bursitis, or any other kind of "localized" pain. You just place the patch over the area that hurts and it lasts for 12 hours. It works by using Lidocaine to numb the nerve endings and block the pain transmitters from reaching the nerves. It is not meant for FM pain, cuz FM pain is widespread.

    So, spriggy, I would call your Neurologist and see if he/she will refer you to a good Rheumy. See if he/she knows a Rheumy that specializes in treating FM. Or see if the doc taking over for your GP will refer you. I wouldn't wait a month for your GP to return. As for the anti-inflammatory, it really isn't going to help you unless you have an inflammatory condition, like arthritis or bursitis. That's probably why you don't feel any relief. I would try using Aleve, if you feel you are inflammed anywhere. As for the joint pain and stiffness, that is most likely a need for a muscle relaxant. Most of us FMights use muscle relaxants, like Flexeril, Zanaflex, Baclofen, Valium, and Soma. These all have sedative effects to them. No gettin' around it. Baclofen is probably the most sedative. Soma is an anti-spasm and muscle relaxant and is pretty effective, but it will make you sleepy until you get used to it, some folks never do. It is usually prescribed 350mg 3 X daily, you could use it 2 X daily. Flexeril seems to help folks, especially when they take it right at bedtime. If you feel stiff, find some of that cream that you rub on for that kind of pain. Get it OTC, there's a bunch of it out there. Give that a try. Also, the Lidoderm/Lidocaine patches would work for that, since it is localized. Just try and get your joints moving when you get up in the morning. The morning is usually the worst time for FM pain.

    Give the Lortab(Hydrocodone) time. Cut the tabs in half and just take small doses more often. Just don't exceed your daily mg dose.

    Okay? I proabably confuse the bajeebers out of you. LOL FM is very complex. It's a long journey to find the right treatment for you. Be patient, you'll get there, and come here for support, questions, or anything you may need regarding FM and what goes with it. Read some of the threads, and posts here when you can, to learn as much as possible about your condition. It's become part of your family now, the best way to deal with it is to accept it into your family, give it boundries, and be sure to let it know that you are in control, it is NOT.

    Hope to hear from you soon,
    tk
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    Mahatma Gandhi

    Last edited by tkgoodspirit; 06-06-2005 at 09:52 PM.

     
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