I am sad for all the people who don't have insurance. I am diagnosed with Fibromyalgia and Major Depressive Disorder. I was diagnosed in 2006 after running from one doctor to the next. They actually told me there was nothing wrong with me because all my tests were normal and I needed psychiatic help. They convinced me to sign myself onto a psych ward. I was diagnosed as delusional there and was screaming in agony from all the pain I felt. They did not help me they hurt me more because they chose to believe it was all in my "head". I got the shingles and went to the ER and because I had been there so much they did not check me for the blisters that I said I had on my right breast all the way around my rib cage to the right. Because they did not give me antiviral medication I now suffer from Post Herpetic Neuralgia which complicates my Fibromyalgia. Now read very carefully, my symptoms were as follows: Pain in the back of my head all the way down to the end of my spine, stiffness in my whole body upon waking and stiffness if I sit longer than 10 minutes, dizziness, nausea, weakness in my legs, numbness and tingling in my arms and legs, shakiness, tremors, painful urination (without infection), painful periods and PMS, Insomnia(I had not slept in 8 days before being admitted and I was psychotic from sleep deprivation. I only had a few hours sleep while on that psych ward.), feeling faint after drinking sugary drinks and foods (which I know now was reactive hypoglycemia and the hospitals cannot test for it because it is very hard to catch), anxiety, diarrhea alternating with constipation (IBS), and the list goes on...I would like to help all the people with or without a diagnosis by telling you that I have been on over 15 different medications at a time and I am sick! I have no idea what is causing my symptoms because of all the side effects from medication interactions. Narcotics were never issued to me until recently and I can tell you that it is a very bad mix for people with Fibromyalgia! I asked my doctors to take me off all 13 medications that they prescribed. They agreed and told me to taper off slowly. I am doing just that and I am very ill right now. The withdrawal is hell! I cannot work right now. I don't want to frighten anyone by telling you all the side effects of withdrawal, so I am just telling you it is hell on earth!!! My advice is to take a spiral notebook and write down everything that happens to you, as far as your symptoms go, in a 30 day time frame. Note your symptoms before your menstral cycle (pain,anxiety, and depression are worse before that time and it is called PMS for women.) The best thing that any one with Fibromyalgia can do is EAT Responsibly, EXERCISE, Sleep well, and take as few meds as possible. I am doing research right now to find a way to help myself and other people. Remember one important fact...you are in charge of yourself! Write your symptoms down! Pay attention to food and medication intolerances too!
I also want to ask if certain types of medications can cause it, or help it along? I was never in this horrible pain until I tried a bunch of different antipsychotics. Body aches was a side effect of a couple different ones I tried. I got off of them and immediately the pain went away, I thought that was it, that I was finally done with the body pain. I was off of them for two months pain free, then I start rapid cycling (bipolar), and had an anxiety episode, and during it the pain came back. It was like a light switch just turned on, and boom in horrid pain. I have been in pain for a month now, my psychiatrist put me on Gabapentin, and it does help some, but doesn't help with all of the pain all of the time. I am not diagnosed with Fibromyalgia yet, mostly because my medical doctor wanted me to go to a specialist, but can't right now due to lack of insurance. If it is not Fibromyalgia I am guessing it must be something like it....some kind of pain disorder anyways.....I hate antipsychotics they are like poison to me, they made me so sick with side effects I can't even take them, I also have sensitivities to other medications as well, at low doses too...I can't seem to tolerate high doses of any medication. I am sorry...I seem to be ranting...I am just really frustrated right now. This pain doesn't help my mood any either. Maybe I will change my profile pic to Oscar the Grouch, lol.
My medical doctor did do a few tests though which came back negative for; Lupus, Hepatitis, Rheumatoid Arthritis, Diabetes. After that she just wanted to send me to a specialist, which I can't do because I have no medical Insurance, and I told her that. She acted like there was nothing else she could do for me, and told me to come back when I had insurance. :-(
I am also diagnosed with PMDD (Premenstural Dysphoric Disorder), Bipolar 1 w/ psychotic features, GAD (General Anxiety Disorder), PTSD (Post Traumatic Stress Disorder), IBS (Irritable Bowel Syndrom), and Genital Herpes. I also have a history of headaches and migraines. I also have some social anxiety, but have been unable to talk to my psychiatrist about it, it is really hard to get in with them. It seems when my stress gets worse my pain gets worse. I think in some research it has shown some brain chemical levels are low in people who have fibromyalgia too. The Gabapentin is really helping with my pain though. I have went through most of today with very little to no pain. It seems though my pain gets worse at night, right now, I have a headache the back of my neck, and shoulders hurt, and pain going down my arms.
Here is a list of my symptoms that seem to be associated with my pain
Pain, in various parts of the body
Tingling, and numbness in feet, hands, top of head (only happens with headaches), back of neck, across shoulders, and rarely on right side of my face across the top of my jaw line extending from ear to chin.
Light headed, and dizziness
IBS, abdominal cramping, diarrhea
Insomnia, or sleep too much
Bipolar, depression, mania
Once when the pain was very intense I think it triggered an episode of disassociation for me. I think the episode of pain was triggered by my bipolar and anxiety episode, but once the pain started it just made my anxiety worse, and then it was like they just fed off of each other my anxiety made the pain worse, then the pain made my anxiety worse. I also started my period shorty after it started. I also have a sensitivity to SSRI (selective serotonin repuptake inhibitors) antidepressants, and Welbutrin, alot of them give me headaches and migraines on the lowest doses. I had the weirdest reaction to Celexa it made my thighs tingly and numb, and on the lowest dose too, it freaked me out and took me 3 days to figure out what was going on. I was on Lamictal 200mg which I did fine with, then tried an increase to 300mg, and it gave me migraines. I also tried Lortab for the pain, and I can't even hardly take a 5mg so I had to take half of it at a time. The Lortab didn't help with the pain that much anyways, and I think it made my mood worse. Some doctors (maybe psychiatrist) think fibromyalgia may be a somatoform disorder, that is probably what they thought you had.
I am sorry you have had such a hard time, and have been so ill. I am also sorry that these kinds of things are not very well understood in the medical community. It needs to be though because obviously alot of people including me, and you are greatly suffering. If it were better understood there would be better treatments. That is why the research should really be a priority. I hope you get something figured out, and feel better soon. I do hope you stay in contact also (sending you a friend request).
When I changed the meds I was taking to the gabapentin, I was so messed up I stopped taking my acyclovir too by accident, and had the most horrible genital herpes out break I had ever had, it was so bad it made the lymph gland in my groin swell which is something that had never happened to me with a genital herpes out break before. I know this was it because as the out break went away the lymph gland swelling went down too. Ugh I am so sick of being sick! :-(
I forgot I also peed/urinated all the time which has actually gotten better as the pain, and anxiety has gotten a better, sorry I just keep remembering more stuff. I have been having trouble with thinking, and memory lately, don't know why.
My daughter has just been diagnosed with fibromyalgia this last January 2013. Worst initial case they had seen. She was worked up by Mayo and the major children's hospital in the area. She has been in utter pain, and there was quite the issue of getting her effective treatment.
Her comorbid conditions include - major depression with psychotic features, generalized anxiety disorder, low thyroid, poly-cystic ovary syndrome, low D3, migraines, psychogenic seizures, constipation, and obesity. At this point, she's taking Lyrica twice a day, tramadol and Tylenol for pain, low dose Ambien to help with sleep, Lamictal/Lexapro/clonazepam for the mental illness, Topomax for her headaches, levothyroxine, vitamin D, folate, and teen vitamin. She's in physical therapy (in a pool), some massage therapy, psychotherapy, psychiatric medication management, and has a general practitioner (NP actually, who is wonderful). It was difficult to find a pain clinic that would take an adolescent and someone who is a fibro patient. The local children's hospital couldn't get her into their pain clinic for three and a half months (although we got into the rheumatology department in a week!).
She's gone from an 9/10 out of 10 pain level to usually 7/8 and one day she was below 6 for half a day. She had to drop out of school until we can get a handle on this. She definitely experiences "fibro fog". When she's in such pain, when I have to sit her up because she can't do it on her own, it makes me crazy (and I'm that way on my own - no help needed!).
Any words of advice?
I am sorry my words of advice are few, as I am just as confused and lost by my own situation as you are with your daughter. I know some people who have not had success with prescription medications, have resorted to trying more natural, and herbal remedies. I don't really have a knowledge of natural remedies myself, or know if they actually work. Hearing your story pains my heart to know of her suffering, because I personally know it all to well. I think if there is a way to support the research of fibromyalgia that we should as it is very important, to figure out the causes, and ways to find better treatments. I know at one point I was in so much pain without any pain medication, that it caused me to have an episode of dissociation. I really hope that the medical community figures it out soon, as there are so many people suffering, and will continue to suffer until they do. I am so sorry about your daughter, and I know it must be hard for you both. It sounds like to me you are already taking a lot of steps to help her. I know that love cannot cure any illness, but I believe it is something essential for those that are ill, it gives them strength of spirit, courage to keep going, and trying, and can also give them a reason to live when they feel they have no other. Make sure she knows how much you love her, and keep trying. I do hope you find something that helps her feel better. Don't give up, and don't loose hope.