Been a Long Road

h i I'm new to this so not sure really what to write i only got FM in Nov so i have not got use to my new life. I have a 3 almost 4 year old son and looking after him now exhaust me i have a wonderful husband who does his best but has to work so I'm on my own most of the day. That is really my live at the mo. Its really hard to write about this condition i don't want people to think I'm complaining but i have already noticed that some of my family think i do, to look at me i seem fine but on the inside i want to scream, I'm on some drugs to help, amitriptalin but i find that i have trouble getting up for my son in the morning and i feel woozy, and I'm on zapain which help and the last one is dicloflex which helps. It makes me wonder how about how many meds you take, are they good for you long time, but living without them i think would be worse  . I have found out that really hot water does help but i would be very grateful for any advise anyone can give me. I have just also found out that because i stayed at home and raised my son instead of going to work I'm not entitle to incapacity benefit which sucks any help on that would be really helpful to. well dont really know what to say now so thanks for reading and i look forward to a reply

 

marriedmummy

marriedmummy marriedmummy
22-25, F
6 Responses May 13, 2007

Hydrocodone norco 325 miligrams life saver!! take two take it no pain.

I too have Fibro and 2 little kids 5 and 8. Life is hell most days and I don't know how to explain to them I need their compliance and don't have the energy to ask them to do things a million times over :(.<br />
I want them to like me and not think I am a grumpy monster.<br />
<br />
Also I have hypothyroid diagnosed after my son was born 5 yrs ago. (But suspect I have had it for at leasst 10 years) <br />
<br />
Just found out I have fibro this week! But have been unwell and for sometime.<br />
Had my bloods checked for thyroid function and work came back I was on the right amounts. Still felt like I had not been diagonsed or on any thing... Years later and MANY doctors later = Fibro as well! They seem to go in pairs these too from all the reading I have done.<br />
<br />
Now see a neurologist and he is awesome! Actually knows this syndrome!<br />
will start treatment with "Amitriptyline" tomorrow as had to ween off the other stuff lol!<br />
He has alos put me on a beta blocker "Metoprolol" one a day, and arthritis meds "Naproxen" 1000 mg 3x weekly. All started this week so see how I go!

ok i can help you with fm tell bout ur self first so i can help

Hi, I'm another fibromyalgia patient. I was diagnosed two years ago, after a decade of being treated for RA.<br />
<br />
This is a very difficult illness, because for others to understand what you are going through takes a lot of reading and patience.<br />
<br />
I stop complaining as much after I realized that my little one started to do the same ( not the best role model as a mom ...). Eventhough I'm tired and in pain most of the time, others won't truly understand it and things won't change anyway.<br />
<br />
I found this wonderful Dr. in Annapolis, MD who works with fibromyalgia patients. I went under a lot of different tests (one of them a saliva test) and when the results came back we started attacking the root of the problems. My life has been different because with the medicine (most of them natural unless I'm in the middle of a crisis) and a diet, I have more control over my health and the crisis I normally go through, last less time.<br />
<br />
If you need more information let me know. I wish you good luck, and I want you to know that I UNDERSTAND what you are going through.

I've treated patients with this disorder with excellent results. It tends to be an accumulation of problems that have been unresolved for a long time. Common causes of structural fibro are flat feet and old sprained ankles, leg shortness, sleeing on the back or stomach, not wearing proper shoes etc. Most suffers will notice one side is much tighter than the other. I called this rt and left sided imballance. Most patients have la<x>yered symptoms, one on top of the other. That is why diagnosis is so confusing. If you have any questions throw them at me. Im very knowledgeable in this subject.

Hi,<br />
<br />
I found this online. I hope it's helpful!<br />
<br />
Blessings,<br />
<br />
~~~~~~~~~~~~~~~~~~~~~~~<br />
Chronic Fatigue Syndrome and Fibromyalgia; Now Treatable Diseases<br />
Chronic Fatigue syndrome (CFS) and Fibromyalgia (FM) are illnesses that often coexist and affect millions of<br />
Americans. Symptoms vary amongst individuals and commonly include severe fatigue, sleep disturbances, cognitive<br />
problems, commonly called brain fog, muscle pain and multiple infections. Unfortunately, many individuals and<br />
physicians continue to deny that these syndromes are legitimate diseases. The medical literature is, however, very clear<br />
that these are legitimate diseases and individuals with these syndromes have measurable hypothalamic, pituitary,<br />
immune and coagulation dysfunction. These abnormalities then result in a cascade of further abnormalities, in which<br />
stress plays a role. The pituitary and hypothalamic dysfunction results in multiple hormonal deficiencies that are often<br />
not detected with standard blood tests, and autonomic dysfunction, including neurally mediated hypotension. The<br />
immune dysfunction, which includes natural killer cell dysfunction, results in opportunistic infections and yeast<br />
overgrowth, making the symptoms worse. Recent studies have shown that the coagulation dysfunction is usually<br />
initiated by a viral infection and has genetic predisposition. This abnormal coagulation results in increased blood<br />
viscosity (slugging) and a deposition of soluble fibrin monomers along the capillary wall. This results in tissue and<br />
cellular hypoxia, resulting in fatigue, and decreased cognition (brain fog). Neurotransmitter abnormalities and macro<br />
and micro nutrient deficiencies have also been shown to occur with these disorders.<br />
Gulf War Syndrome, which is almost identical to CFS and FM, was found to have a parallel cause. The cause was<br />
determined to be from multiple vaccinations under stressful conditions in susceptible individuals. These vaccines,<br />
which are viral mimics, resulted in the same coagulation cascade and the deposition of fibrin monomers, resulting in<br />
the same tissue hypoxia that occurs in FM and CFS. These multiple injections are being discontinued by the armed<br />
forces.<br />
Current research suggests that many triggers can initiate a cascade of events, causing the hypothalamic, pituitary,<br />
immune and coagulation dysfunction. The most common initiating cause is a viral infection, which is very commonly<br />
Epstein Bar Virus, Cytomegalovirus or HHV6. These are found in 80% of CFS and FM patients. Many people with<br />
these syndromes can pinpoint the start of their disease to a viral infection that never got better. Also, stress seems to be<br />
a contributing factor. Effective treatment, with 80 to 90 percent of individuals achieving significant clinical benefits,<br />
can be achieved by simultaneously treating the above problems that an individual is found to have. The mix of<br />
treatments needed varies from patient to patient. There are some abnormalities that are common. For instance, close to<br />
100% of individuals with these syndromes have low thyroid. This is, however, usually not picked up on the standard<br />
blood tests because the TSH is not elevated in these individuals because of the pituitary dysfunction. Many of these<br />
individuals will also have high levels of the anti-thyroid reverse T3, which is usually not measured on standard blood<br />
tests. In addition, the majority of individuals can also have a thyroid receptor resistance that is not detected on the<br />
blood tests. Consequently, thyroid treatment, especially with timed release T3 is effective for many patients. T4<br />
preparations (inactive thyroid) such as Synthroid and Levoxyl do not work well for these conditions. Adrenal<br />
insufficiency and growth hormone deficiency are also very common with these disorders, and supplementation with<br />
these hormones can often have profound effects. As with thyroid testing, these deficiencies are, unfortunately, usually<br />
not detected with the standard screen blood tests and require more specific testing.<br />
When an individual is found to have one of the viruses discussed above, these can be treated with resulting<br />
improvement in symptoms. The are a number of drugs, including anti-viral medication, that are currently undergoing<br />
phase III clinical trials at clinics, including ours, for FDA approval in the treatment of FM and CFS.<br />
Although a concept that is sometimes uncomfortable and foreign to traditional medical styles of thinking, the need for<br />
multiple interventions is effective when an illness affects a critical control center (such as the hypothalamus), which<br />
impacts the multiple systems noted above. Unfortunately, there is not a single treatment that reverses hypothalamic<br />
dysfunction directly. Thus, this situation is different from illnesses that affect a single target organ and which can be<br />
treated with a single intervention. For example, pituitary dysfunction itself often requires treatment with several<br />
hormones. This effect is multiplied in hypothalamic dysfunction, which affects several critical systems in addition to<br />
the pituitary gland. An integrated treatment approach based on simultaneously treating the above problems is<br />
significantly beneficial in CFS and FMS. Individuals with these devastating syndromes can “get their lives back”<br />
despite the fact that they were previously told, “There is nothing that can be done,” or “It is all in your head.”<br />
FFCTC1

Hi could you send me the link to the above article please - sounds like a very interesting site! Ty