Not diagnosed but Fibro questions

Discussion in 'General Health & Wellness' started by dzlady, Jun 19, 2010.

  1. dzlady

    dzlady New Member

    Hello. I am a 39 yr old female mother of two that has been suffering with leg pain for quite some time now. I was first diagnosed with RLS but when the medications for this did not ease the pain at all, the doctor said that wasnt what I had and put me on neurotin 300 mg 3x/day. That eased the pain somewhat, but not completely. I have been doing some researching of my own, with the symptoms I have and found fibromyalgia and am thinking that may be what it is.

    I have leg pain that is like a dull ache that throbs at times that starts around my butt and shoots down my legs. The joints hurt the most (hip, knee, ankle), but the pain is continuous throughout the length of my legs. My left leg is worse then my right. Both of my feet have tingling in them and I get what I will call "charlie horse" in my stomach. I call it that because it is the same feeling I get in my legs at times but its in my abdomen. The leg pain almost feels like it is deep, down to the bone. My hands and feet are always cold and I suffer from frequent severe migraines (which was diagnosed by my neurologist who said they are hereditary...from my mother) I have bumps, like knots on my arms and torso. They are under the skin and have no discoloration and do not hurt or change in size. I am not sure if the bumps or the abdominal pains are associated with this or not, but I have seen where others with fibro have the same thing.

    The leg pain is affecting my sleep. I havent been to sleep yet since yesterday. I am so tired, yet when I lay down I am in more pain. The pain is more irritating then anything, to the point I just want to cry because I am so tired yet cannot go to sleep. I would classify it as a moderate pain. I have it throughout the day, but notice it more at night when its time for bed or when I am relaxing of an evening, watching tv with my husband. Once I do get to sleep, usually anywhere from 4-10 am I end up sleeping until 2-4 in the afternoon. And thus starts a vicious cycle.

    I do not have insurance so going to a doctor at this point is kinda out of the question. I do not work outside of the home and at this point almost couldnt if I wanted to because of the lack of sleep. I am depressed most of the time with some anxiety. I always feel anxious, like a kid at christmas time...like I cant wait for something special, but nothing is coming up to be anxious about. I have also tried relaxing in a tub of hot water (sometimes 2-3 times a night) and sometimes that works, but most of the time it doesnt.

    Obviously the lack of sleep is causing me to be irritable with my husband and children. I have tried several things to assist with the pain, as I mentioned before, neurotin, loratab, vicodin, OTC tylenol, advil, naproxin, tramadol, flexeril, and things to make me tired enough to sleep thru the pain like OTC sleep aids, allergy medication, but NOTHING works. The loratab wakes me up, makes me hyper, as does the vicodin.

    I feel like I have chronic fatigue. And have absolutely NO energy to do anything. I have to make myself prepare meals and clean up afterward. Thankfully I have a very supportive husband that does assist me in the daily household chores of laundry, vacuuming, dusting, dishes, etc. But I feel like I should be doing this as he works a full time job out in the weather working lots of overtime and is called out sometimes at all hours of the night. And there are times when I feel so bad I just dont want to do anything.

    At times, I feel like he thinks I am just making excuses. He tells me I need to make myself get up at a decent time but when I cant get to sleep until the wee hours of the morning, getting up at a decent time is just not possible. My children are teenagers, so they can take care of themselves, thankfully. When its bedtime, I feel wired. Many nights I lay in bed and watch tv and when I turn off the tv thinking I am tired enough to go to sleep, then the pain keeps me awake.

    Does this sound like fibro to anyone? I have used webmd and indicated all my symptoms, and it gave me a list of like 20 things. Obviously, I was able to rule out some of them (have a medical career background) so tias and strokes were automatically ruled out. I just dont know what to do, since I cannot afford to go to a doctor. Does anyone have any suggestions on OTC medications that might give me some relief? I am just almost at my breaking point.
  2. TwoCatDoctors

    TwoCatDoctors New Member

    Below is my list of resources for medical care and prescriptions. Keep in mind that many of the programs for free or low cost prescriptions have paperwork and requirements that you must meets before obtaining prescriptions. Good luck and hugs.

    --------------
    To find your local NAMI (National Alliance on Mental Illness) and seek mental health support groups, and possible free/low cost mental health care, check out the safe site below:

    http://www.nami.org/Template.cfm?Section=Your_Local_NAMI&Template=/CustomSource/AffiliateFinder.cfm

    Below is a site for free medical clinics. Go on the link and then click on your state, then scroll down to find a location near you.

    http://www.uniteforsight.org/freeclinics.php?state=MI&statename=Michigan Find out if you have to make an appointment or if you have to just show up and wait in line.

    Some churches will help you, even if you do not attend church there.

    If you are sick, injured or in pain, go to a public hospital and they are not permitted to turn you away.

    As to prescriptions, I don't know if they will provide free prescriptions.

    Here are some sites where you can apply for free/low cost prescriptions but it takes a while to get them and you have to have paperwork filled out and your doctor (the clinic) would have to sign the paperwork too.

    PPA/Partnership for Prescription Assistance - Brings together America’s pharmaceutical companies, doctors, patient advocacy organizations and civic groups to help low-income, uninsured patients get free or nearly free brand-name medicines.

    Needymeds.com - Organization which helps patients learn about patient assistance programs. THEY CAN NOT ANSWER CALLS CONCERNING INDIVIDUAL REQUESTS FOR ASSISTANCE, they can provide information only. They are not a provider.

    RX Assist - Searchable database by company, brand name, generic name and drug class which includes eligibility and application instructions.

    RX Hope - The only patient assistance Internet initiative financially supported by PhRMA (Pharmaceutical and Research Manufacturers of America) and participating pharmaceutical companies.

    RX Outreach

    Benefits Check Up - Provides individuals 55 and over with a confidential personalized report of public and private programs that can help save money on prescription drugs.

    Canada Pharmacy.com - Need some cost breaks on your scrips? Try out-of-country.

    RX 4US - By negotiating on your behalf with a network of licensed Canadian pharmacies they bring you good prices and reliable Canadian drug service.

    Costco Pharmacy Online - Online pharmacy to purchase drugs, vitamins and get health info.

    Consumer Reports Best Buy Drugs - Reports and information to guide consumers and doctors in making more cost effective prescription drug choices.

    Consumer Reports Drug Reports - Combines an expert review of the scientific evidence on prescription drugs with their prices. Compare and contrast prescription drugs by category - that is, drugs in the same class that are used to treat a specific condition or illness such as high blood pressure, high cholesterol, allergies, coronary artery disease, heartburn or depression. The reports can be easily and quickly downloaded as attractive PDFs to print out and discuss with your doctor.

    Disability Resources.org Prescription Drug Resources -

    Indigent Prescription Programs -

    FDA – Buying Medicines And Medical Products Online -

    FDA – Consumer Education - What You Should Know About Buying and Using DrugProducts -

    FDA – Saving Money On Prescription Drugs -

    FreeDrugCard.us - Sponsored by a non-profit organization to help all Americans cut their prescription drug costs. Simply download your FREE Prescription Drug Card and receive savings of up to 75% at more than 50,000 national and regional pharmacies. This Prescription Card is not Insurance, is pre-activated and can be used immediately.

    Free Medicine Program - Helps patients in obtaining prescription drugs and medications absolutely free of charge.

    Helping Patients - Interactive website designed to help providers/patients find patient assistance programs

    Medicare Prescription Drug Info Search - Allows you to search for programs (both private and government) based on where you live

    Guide to Choosing a Medicare Approved Drug Discount Card -

    Medication Foundation - Information clearinghouse for low cost and no cost prescription drug programs.

    Medicine for Free - NOTE: This site charges a $9.99 subscription fee

    Medicine Express - Designed to help senior citizens or anyone who does not have any prescription coverage and are having trouble financially obtaining the medicines they need.

    State Pharmaceutical Assistance Programs -

    Needymeds.com - Organization which helps patients learn about patient assistance programs. THEY CAN NOT ANSWER CALLS CONCERNING INDIVIDUAL REQUESTS FOR ASSISTANCE, they can provide information only. They are not a provider.

    Pfizer Sharecard - Pfizer Sharecard is especially beneficial for Medicare recipients and provides Pfizer Pharmaceuticals at a greatly reduced rate. Take the qualification test to see if you can benefit.

    PharmacyChecker.com - Compare prescription drug prices for more than 1,000 medications.

    PHRMA/Pharmaceutical Research and Mfgs. of America - Pharmaceutical Research and Manufacturers of America, a detailed listing of programs and contacts.

    QDrug.com - Info on state and federal funded prescription programs

    RX Assist - Searchable database by company, brand name, generic name and drug class which includes eligibility and application instructions.

    RX Hope - The only patient assistance Internet initiative financially supported by PhRMA (Pharmaceutical and Research Manufacturers of America) and participating pharmaceutical companies.

    RX Outreach -

    America’s Guide to Save – Buying Prescription Drugs Online -

    ScriptSave - The ScriptSave card offers prescription drug savings for the entire household, as well as free access to health and wellness information.

    Medicine Program.com - An organization which assists patients, with help from the physicians, to enroll in patient assistance programs.

    Together RX Access Card - A free prescription-savings card for eligible residents of the United States and Puerto Rico who have no prescription drug coverage.

    Medical Discounts International Inc -

    AAA Prescription Savings Program - Free with AAA membership. Save average of 20% on prescriptions. No deductables or co-pays. Simply present your AAA Prescription Savings card at a participating pharmacy for the discount.

    BenefitsCheckUpRX -

    PPA/Partnership for Prescription Assistance - The Partnership for Prescription Assistance brings together America's pharmaceutical companies, doctors, other health care providers, patient advocacy organizations and community groups to help qualifying patients who lack prescription coverage get the medicines they need through the public or private program that's right for them. Many will get them free or nearly free. To access the Partnership for Prescription Assistance by phone, you can call toll-free at 1-888-477-2669.


    [This Message was Edited on 06/19/2010]
  3. SnooZQ

    SnooZQ New Member

    The actual diagnosis of fibro is currently a matter of following the definition set forth by the American College of Rheumatology. Basically a matter of tender points (specific definition & locations) plus a HUGE list of rule-outs.

    While it is possible that fibro definition may be cleaned up/made clearer in the future, that's where we are at present. So, I would say that yeah, some of your symptoms sure sound like they could be fibro-related, however there are as you say any number of other possible syndromes / diagnoses.

    For example, if your pain entails primarily the lower half of your body & involves shooting pain down through the legs, sciatica would be a contender as a common diagnosis with similar symptoms. Thoracic outlet syndrome might be another possibility to research.

    Getting to the most accurate conventional medical diagnosis would most likely entail quite a bit of diagnostic work/tests/imaging etc. All of which cost $$$.

    Lack of health insurance in this economic climate does not always equate to total lack of medical care. Network around to find what your community offers in terms of free/low cost/sliding scale care. Some private docs may be willing to consider you as a patient, if you are able to pay SOMETHING. I say this because I have encountered people of some financial means who don't seek health care at all when needed due to lack of insurance ...

    But I do say network & get your facts, try to get the most competent docs for your money, if that is limited, as is likely.

    If you have an established relationship with a neurologist you respect, you might call his/her office staff to see if an appointment could be arranged there. "New patient" consults tend to be among the most costly.

    Amazon is a good place to scout out books/information sources. Look for books in the subject area of fibro, or sciatica, or whatever, then read the reviews. Pick out a few promising titles.

    One book I would definitely rec. to you is Pain Free 1 - 2 - 3 by Jacob Teitelbaum, M.D. This book contains thoughtful commentary on both conventional med approaches to pain syndromes, as well as alternative healing modalities & self-care. Where funds are limited, it is a great resource.

    Your public library is a good source of low-cost information. If your library doesn't have the book titles on your list, ask if they have an inter-library loan service. (Usually small fee involved for postage, but cheaper than purchasing books outright.)

    I wish I could recommend an OTC med, supp, or an RX treatment for that matter, that is guaranteed to improve your pain. Many of the things you have tried are helpful to some people with fibro & other pain syndromes -- but not to all. There seems to be considerable individual variation in terms of response. So, more trial & error up ahead.

    I'm sorry to hear of your pain & the relative lack of emotional support from your hubby. But it does sound like he is really pitching in with chores, which is something to be thankful for. Any chance your teens could take some of the housework burden off of him?

    Take care & keep looking up. Some of us have persevered to discover factors that contribute to our pain, fatigue, insomnia, depression, etc., and in doing so have reduced our day to day suffering as well as frequency of flares.

    There is hope. I'm glad your hubby has a lot of work -- see if there is any way you can budget together to scrape together a little cash for health care.

    Best wishes.
  4. dzlady

    dzlady New Member

    Reading the replies I received, I guess I did forget to leave a few things out (symptom wise), because the most severe pain is in my legs. I do have pain in both shoulders, elbows and wrists. Most of my pain is associated in the joints, although the pain does shoot down the limbs. My legs are just worse than any other spot and is what is mostly causing me at this time the lack of sleep. Lack of sleep would be my biggest complaint past the pain.

    I did go out yesterday and purchased some melatonin as well as a few other herbal remedies for pain, lack of sleep, energy and more specifically for my legs. I already take fish oil for the migraines and have been for quite some time.

    Since I was up for 28 hours without sleep, after dinner last night (6 pm) I took the herbal meds I chose for bedtime (vs. the ones for am). I was in bed by 7 pm and asleep within minutes. I slept the best I have slept in ages, awaking this morning at 7:45 am. I took the herbal meds I chose for morning hours at about 8 am with breakfast and although I do still have some pain in my legs, its diminished from what it has been and I am very awake and full of energy. A HUGE plus from what I have been experiencing for the last 5 years or so.

    After discussing with my husband last night about exactly what was wrong, what I thought it was and how it works, he understands more. He apologized for doubting me and how he has been "on me" about setting a sleep schedule. We discussed how things will help me down the road and come tomorrow, I am going to be looking for a sliding scale clinic/doctor that will see me. If I dont have fibro, then at least maybe they can tell me what it is that I do have.

    I have done research on herbal meds as well as fibro and the pressure points/pain points and know that you have to have 11 of the 18 to be classified with fibro. Some of the other extras that come along with fibro, like the migraines, the tingling, etc., I also suffer from. When the pain isnt hurting my legs the tingling from my legs and feet keep me awake.

    I appreciate all the assistance you have given me and will be looking into some of the options listed. Once I have a diagnosis or more information, I'll be back !
  5. FibroOne

    FibroOne New Member

    Anybody mention sciatica? Distribution of the sciatic nerve is from hip to toe mostly running down the back of your leg. Burns and makes the muscle in your thigh pull so hard it feels like a rock. lots of the time this is a reffered pain from the lumbar spine, mothers with young kids and big purses tend to cary kids on their hip, irritates the lumbar region Voila' leg pain'.

    If it is as mentioned, get a softball, not a soft ball but the large version of the ball used to play baseball (ask the boy kids) take the ball put in bed with you, under you, roll around 'til you find the sorest spot you can, press and hold not to exceed 20 sec (it'll make you too sore). it will cause the overall pain to lessen, hot baths before bed helps as does stretching, get a book from the library on stretching. Ease up on carring the kids, let them carry each other if possible, take the bricks out of your pocket book, who actually needs to carry a mini sewing machine and three pairs of sissors, just kidding about the mini machine, don't forget to roll that ball up your spine, on the big muscles and your hips, lots of pain 'Gotta love it.

    Oh yeah, doesn't sound like fibro.

    Hope this helps

    fA
  6. FibroOne

    FibroOne New Member

    Anybody mention sciatica? Distribution of the sciatic nerve is from hip to toe mostly running down the back of your leg. Burns and makes the muscle in your thigh pull so hard it feels like a rock. lots of the time this is a reffered pain from the lumbar spine, mothers with young kids and big purses tend to cary kids on their hip, irritates the lumbar region Voila' leg pain'.

    If it is as mentioned, get a softball, not a soft ball but the large version of the ball used to play baseball (ask the boy kids) take the ball put in bed with you, under you, roll around 'til you find the sorest spot you can, press and hold not to exceed 20 sec (it'll make you too sore). it will cause the overall pain to lessen, hot baths before bed helps as does stretching, get a book from the library on stretching. Ease up on carring the kids, let them carry each other if possible, take the bricks out of your pocket book, who actually needs to carry a mini sewing machine and three pairs of sissors, just kidding about the mini machine, don't forget to roll that ball up your spine, on the big muscles and your hips, lots of pain 'Gotta love it.

    Oh yeah, doesn't sound like fibro.

    Hope this helps

    fA
  7. DayByDazey

    DayByDazey New Member

    I asked my GP to refer me to Rheumatologist. Knots on hands, Rheumatoid Arthritis. Hands & Feet X-ray. L foot knots & swollen joints, Rheumatoid Arth. Knot at bottom of thumb near my L wrist & near R knee-Osteo Arthritis. I have RLS-Take Mirapex twice a day since my RLS goes up my leg & into my complete R arm. Fibromyalgia-Voltaren. My 2nd appt with Rheu is next week 7/15 where we'll talk about my bloodwork for RH factor & checking for viruses & I have a Nuclear complete skeltal bone scan tomorrow 7/9. I've had to come home early, go in late, miss hours here & there for past 2 months with pain, legs, arms, joints, inflammation, low fever or felt like it-thermometer never said i had fever. Came home suddenly today. Nausea, couldn't think, fibro brain fog, weakness suddenly & slept for 4 hours. My sleep take Imipramine, Clonazapam, Flexeril. Most times sleep all night. Last nite 8 hrs & sudden 4 hrs this afternoon. I'm now up & regaining some energy. I can lose energy in a blink. Past week, couldn't do dishes, laundry, run vac & don't give a frog about dusting. I live independently, have a great job & new vehicle & I'm afraid I'm about to lose it all. Going from $45K to $1400 mo disability???
    Lord I pray not. But I can't help how I feel-I have no control. Just being tired you have control, this is no control what so ever. Good Luck. I'm new to Posting & Fibro. Connie Sue (DayByDazey)