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i am new in here and have lots of ???
3 Replies
lorieholtz - October 24

i became disabled 5yrs ago due to a cervical issue which resolved with surgery, but since then i've done nothing but get worse. vaguely fibromyalia was broght up but nothing in depth. since august i no longer live with just the cervial pain but pain everywhere in my body...from the bottom of my feet to the top of my head. since aug this has progresed worse upon worse now to the point i can't deal any longer. my pain dr. is pretty good but i'm sure i've aggravated him alot with all of this (wonder if he truly understands) at first he's had me on perc 10mg up to 8 aday. really that didn't even do it cux u c now i have a high tolerence to all these meds from being on them for so long, but up until may i had taken myself off all pain meds to build my tolerance to pain, then it got to the point i could no longer deal, but that was just cervial pain and the areas involved. now its everywhere and i mean severe. over these 5yrs i've been tried on all types of meds but i either have allergic reaction on side effects and then taken off. some of these effects have caused me to be suicidal which i'm not but the meds made me feel that way. the last one was cymbalta and i ended up in the hospital.. my behavior was not of my own i was was such an ugly picture and i'm so embarressed to even speak of it. my dr was actually the one that called 911 cause he thought i was going to kill myself and seriously i wasn't at least not intentionally. now he has reduced my dosage of percs to 5mg take 2 every 4hrs along with this patch called fentanyl. so far i see very little results..omg i even called the pharm comp. to find out when this stuff should be kicking in cause i'm told how strong of a narcotic it is. my condition as of right now is pain everywhere and can hardly walk anylonger. i'm so glad i found this place cause maybe talking with others that have gone thru this can help me. i feel so desperate at this time. also lol i need to figure this whole thing out with threads and how u guys communicate with each other. i need a puter course on this lol. i used to just regualar chatting. i really hope to hear some sort of backfead on this and all of ur help plzzzzzzzzzzzz.... lorie


axxie - October 26

Hi and I’m sorry for the way, you have experienced medicine. You need a new GP, and you need to get copies of all your tests. Everything you describe, represents Fibromyalgia, I believe you were misdiagnosed, you need to find a doctor who will listen and who really knows fibromyalgia.

Fibromyalgia is a chronic condition that causes disabling pain all over the body -- as well as stiffness and tenderness in muscles, tendons, and joints. It is most common among women ages 35 to 55. Although it's one of the most common muscle problems. There is no inflammation or joint damage, as occurs with arthritis. There is no damage to internal body organs, as with rheumatoid conditions like lupus. It is called fibromyalgia syndrome because it is identified by a collection of symptoms.
The list of possible fibromyalgia symptoms is a long one: chronic muscle pain; muscle spasms or leg cramps; sleep problems; severe fatigue; anxiety; depression; morning stiffness; headaches; difficulty concentrating; skin sensitivities; irritability; intestinal problems.
But these, are also common to liver disease such as, lupus, Lyme disease, thyroid dysfunction, heart disease, arthritis, degenerative joint disease, chronic fatigue syndrome, irritable bowel syndrome, and other disorders -- and therein lies the difficulty in diagnosing fibromyalgia. While it's not clear what exactly triggers fibromyalgia.
Fibromyalgia patients have higher levels of two substances -- a nerve chemical called substance P, and nerve growth factor in the spinal fluid. We also have lower than normal levels of the brain chemical serotonin, as is also true with people suffering from depression and anxiety. All this produces a dysfunction in the body's ability to process pain, and creates supersensitive nerves throughout the body, a rheumatology specialist should be able to clearly diagnose you.
To figure out what's going on, doctors diagnose fibromyalgia by examining specific "tender points" on the body. There are 18 specific tender points; specific locations that are tender for everyone. But for people with fibromyalgia, these points are significantly more tender. People are more sensitive at those points. A dysfunction in the central pain processing amplifies the sensation. Tenderness or pain in at least 11 of these 18 points is the hallmark of fibromyalgia. Also, the pain is widespread on both sides of the body, neck, buttocks, shoulders, arms, upper back, and chest. Tender points are around the elbows, shoulders, knees, hips, back of the head, and the breast bone. The muscle pain can range from mild discomfort to severe enough that it limits a person's everyday life, including work and social activities. The pain is often described as burning, gnawing, throbbing, stabbing, or aching. When the person relaxes, the pain may be more noticeable -- and less so when you are active. The result: Everyday sensations of discomfort and pain are amplified beyond the norm. Slight bumps and touches can cause disabling pain, if you have fibromyalgia. This pain can be aggravated by outside factors such as noise, weather changes, and stress.
Prepare for your appointment. Before meeting with the doctor, prepare to accurately communicate your symptoms. Think about, what your symptoms are, and when they started.
How long they've been going on -- and whether it's been continuous, or off and on. Have you noticed any triggers for your symptoms? How do your symptoms affect you? Is pain sharp, a dull ache, does it cause nausea? How do symptoms affect your feelings? Does pain make you depressed or anxious? How do symptoms affect your work or home life? Are you very fatigued and can't do normal activities? What drugs, herbal remedies or supplements are you taking? What surgeries have you had? What current treatments has another doctor or specialist prescribed?
Keep a pain journal, doctors will listen more if you keep a daily record of how you feel, even if it's just for one month or for three months. In your pain journal, make note of intensity of pain (on a scale of 1 to 10), what you were doing at the time, and how you felt emotionally. It will help you and your doctor see patterns in the pain.
There are no lab tests or scans that can help doctors diagnose fibromyalgia. But various blood tests can help them rule out other medical conditions. Some patients need to have respiratory problems checked or get a sleep apnea study done. On occasion, the problem is sleep apnea or snoring, both of which disturb sleep.
Find the right doctor. It's important to find a doctor who cares about you -- and wants to help you. It's very common, physicians having very little time. Sometimes they don't really hear everything a patient says.
Never stay with a physician you don't like or trust. It's not all in your head -- and while you may be depressed, depression is not the whole picture of fibromyalgia. Pain is very frustrating. In the medical community, they probably don't have the empathy for pain that should be.
Get emotional support. A therapist's support can be helpful when you're dealing with fibromyalgia. Fibromyalgia has such a stigma. Sometimes it is really helpful to see a therapist -- not because you're crazy, but because you have to deal with pressure and stigma. It's nice to have someone objective to talk to.


lorieholtz - October 26

ty axxie for responding back to me. so much that u said does relate to me, but i think i've got so much medical issues that it becomes frusturating to drs. i've never had an episode like this one, but i became under severe stress and like a chain it became one episode of personal issues after another. when this started then all these sypmtoms started. at first it was not to this severity, but gradually it got to be. i'm so worn out to the amount i can't even describe. the pain has so taken over and i'm so no longer in control of my body, emotions and health. i do see a counselor tomorrow, cause i realized this is much greater than me and i need the help. i to am afraid of is it really fbs or someother condition. i sit here and just cry.... just wanted to have some sort of relief.. i pray and pray for it. since my surgery over 5yrs ago i've lost so much.. my friends, family, social activity and i guess u could say just the enjoyment of life. i'm not sure if i'll ever get any of this back. i hate taking meds, but i feel like i no longer have that option and now since he has changed my dosages due to this pain patch which i feel he thinks is some sort of a miracle drug i'm experiencing even more and not getting relief. i'm so tired .. so tired. i go on about 2-3hrs of sleep. i woke up crying in my sleep and when asked what was wrong once i woke up entirley all i could say is "i'm hurting so badly".
btw its not a gp that i'm seeing but a neurosurgeon and a pain mgmt dr both in the same office. u know i liked it in the old days lol when u could see the same dr for many things. now for every complaint they want you to see a specialist..grrrrrr lol once again i want to ty for being here and responding.. i need all the support that i can get. oh i watched the today show today and there was a woman on there with ms. her life was totally miserable and she was going thru the most extremist symptoms. she had a friend that was just not a friend to her but also a spiritual advisor. now i know lots of ppl wouldn't go for this, but u know what when u get to this point you'll try anything lol., but anyhow she told her that she was letting her disease run and control her life and she needed to claim it back. she told her for 29 days she was to give everyday a gift to someone. it might been a tissue for someone crying, or she would buy flowers and give them out at malls and etc. very simple things though. for a long time she was having to walk with a cane and about on the 5th day (i think) she noticed she was walking without her cane. she said she was able to cope with life once again and felt that the pain level was much lesser. well she was asked why do you think this happened and she said something to the order that she thought it was taking her mind off herself and onto others. from what i can remember this was a few yrs ago that she did this, but to this day she continues. of course she wrote a book about this lol.. don't they all lol. you can go to the and you can read about this and a part of the book. you know i'm not sure that that is not such a bad idea, cause when we are into this pain level we have a hard time to think about anyone but ourselves (and i feel i am intitled cause its real), but who knows maybe this isn't such a bad idea to try out. i love to give anyways so i know it would come with enjoyment. problem is getting out to seeing anyone.
hope to hear back from you and all the others on this forum.


axxie - October 30

Hey Lorie, I'm sorry for all that pain you are having. You are not alone in this misadventure we are all going through it and we are all at different levels of acceptance.

Try to talk to your doctor and see if they are willing to give you one of the three drugs that has been approved for fibro, Cymbalta, Savella and Lyrica.

All three drugs you can google search and see if anyone of them, could be your helpful poisoin.

If you need any health choices to help you until your team of doctors and yourself choose your therapy, you can do a few things to eleviate some of the issues you are having.

For some syptom relief

For sleep, use Melatonin from 1 to 3mg one hour prior to bed time. It's a hormone, that regulates sleep/wake cycles and improves sleep quality.

You can add 5-HTP, an amino acid, which boots production of serotonin and melatonin, promoting relaxation and improve sleep, take 50 to 100 mg before bed.

Also L-theanine, an amino acid, reduces tress, promotes relaxation, take between 50 to 100 mg before bed.

Bones hurt, try calcium and magnesium, those essential minerals for healthy bones, take b etween 1200 calcium and 320 mg of magnesium daily more if there is osteoporosis, also take with a good multi-vitamin.

Again for pain try Joint Q or Glucosamine Chondroitin sulfate 500/400 mg up to twice a day, I use it along with everything, I wrote above and it helps to control my flares and my pain, so much so that I don't feel my pain, most days, until of course when I forget my natural drugs.

For fibro fog and anxiety, use Ginkgo biloba it's an antioxidant that helps improve memory and cognitive function by increasing blood flow to the brain, take 40 mg three times daily.

For nervouness and irritablity and any symptoms of menopause such as night sweats, insomnia, you can use Black cohosh take 40 mg twice daily.

Again to regulate your hormones balance try using Chastevery very good if you happen to be in peri-menopause take from 200 to 400 mg daily.

Also for libido, you can use L-arginine, Panax ginseng, tribulus terrestris and ginkdo bilobal, try looking for a combination formula.

Hope you navigate well, you deserve better then pain.




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