new and wondering...

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by Nin B, Dec 19, 2013.

  1. Nin B

    Nin B Member

    HI everyone,

    I'm new here, I was diagnosed 2 yrs ago with fibromyalgia in a country where we've no specialists dealing with these conditions. It has been very hard coping because of this, I feel like the doctors are impatient and almost irritated with me. I do my research when i experience different 'symptoms', and even though i have great family support i feel so alone and that no one understands what its really like. I hope to find here, a better understanding of what i am now going through and what i could expect in the near and distant future. Also to find and be a support to others.

    I have been coping without meds for the past 9 mnths, I was on a combo of gabapentine and amitriptyline, it worked alright controlling the pain but not the other symptoms. I found it difficult to cope with the side effects so i withdrew from it. Now there are a few new symptoms affecting me and i was wondering whether others have these experiences. When i wake in the morning, i have the usual fatigue, but i experience a strange weakening, tingling sensation in my legs. It feels disabling and almost like it is impossible to move them, until i try. Also, the neck pain has gotten worse and it presents with a headache that relieves if i put lots of pressure on it with my fingers. The pain seems to radiate to my eyes, forehead and cheek area when i put pressure on it.

    Longing to hear from you wonderful people.
  2. Nin B

    Nin B Member

    Thnx for ur reply and welcome!

    I wanted to get my thyrooid checked bcuz of the strange sensation in my neck and my intolerance for cold temperatures. Saw an ENT this wk, but he said that physically everything was ok with my thyroid. I convinced him to check my thyroid function so i should get the result early next yr. I have other sypmtoms i am trying to cope with too!
  3. Mikie

    Mikie Moderator

    Just wanted to welcome you aboard. There is a lot of wisdom among our wonderful members and they generously share what they have learned. Good luck to you.

    Love, Mikie
    Nin B likes this.
  4. Darrae

    Darrae Member

    Welcome Nin,

    I was diagnosed with fibromyalgia 18 years ago. It is common with Fibro to find yourself with low thyroid function. Like Jammin, I was told for 10 or more years that my thyroid was fine, within the normal range when they ran T-3 T-4 tests. I finally found a G.P. who listened to my family history of low thyroids and was willing to run a TSH, (Thyroid Stimulating Hormone) test. Normal was 4. I was 9. In my research, I've found that most who suffer from Fibro have low thyroids as well as other auto-immune conditions, often in combination. I've been researching for years looking for relief.

    Three months ago or a little over that now, I stumbled upon the right combination of pharmaceuticals, vitamins & minerals, and homeopathic supplements that chased off one of the biggest flares I've ever had, and has kept me from flaring while I work a strenuous 8 hour a day job, 40 plus hours a week. What works for one person, may not work for all. Or what works for one person may work for another. Jam's right about the magnesium. If you happen across some of Rhamadan's posts, he's fairly well-versed in many of the "combinations that work". Check him out.

    Nice to have you aboard! Good luck.

    Hugz,
    Dar
  5. Nin B

    Nin B Member

    Oh thnx alot Dar, I appreciate it. I only heard about the vitamins and minerals helping via research, the dr here thinks I should stay on an anti-convulsant/anti-depressant combo forever! Which has been discouraging to me, I'm really not thrilled about the meds. From what I am reading on here, everyone has been searching for years before actually finding something that is effective for them. I guess what i really need is a dr that has a little patience to address my concerns. Apparently my dr thinks I am looking for pity from him and that i should just 'suck it up' and take whatever meds he prescribes. Which is, to say the least...FRUSTRATING!
  6. IanH

    IanH Active Member

    Please be aware:
    Rheumatism is NOT fibromyalgia. Rheumatism is a common term for arthritis.
    Fibromyalgia is a condition where pain is felt BILATERALLY and not in specific regions where pathology is present. There is a condition called "complex regional pain syndrome" (qv) which has sometimes been mistakenly called rheumatism. Fibromyalgia is also not a disease or condition of the joints. Joint pain is not felt in fibromyalgia. FM also affects brain function, particularly of the hypothalamus and of the adrenal cortex output of cortisol. These are not seen in arthritis. FM involes peripheral neuropathy, also not seen in arthritis.

    Most current evidence says that FM is a symptom set of many underlying diseases, ME/CFS being the main one. It is the result of low grade inflammatory elevation involving a distinct set of pro-inflammatory cytokines. None of this is seen in Rheumatism, or if it is then it will not be system wide.

    Hence it is NOT a new name for rheumatism.
  7. Nin B

    Nin B Member

    Oh well, atleast i am beginning to feel a little hopeful about this whole situation. Thnx for the added info.

    I'm from the caribbean, namely the Commonwealth of Dominica. Its a lovely place, just limited resources.
  8. IanH

    IanH Active Member

    Nin B

    I am sorry to hear that you have FM. Good news is it can be managed to allow reasonably comfortable living using nutritional supplements. There is no cure but many people do recover sufficiently to work part time or at least get a reasonable set of activities and chores completed.

    The illness does not usually get worse, however some people already suffer from other conditions such as arthritis. Many cases of athritis + FM do get worse especially if they do not manage their activity carefully.

    Many people diagnosed with FM actually have ME/CFS (Myalgic Encephalomyelitis or chronic Fatigue Syndrome = same thing). Such people have FM as a symptom set of of ME/CFS. You can tell if you have ME/CFS becuase you will suffer a "malaise" or fatigued sickness many hours (usually more than one day) after over-exertion. It is quite common for Rheumatologists to diagnose FM but not ME/CFS even when the person suffers from ME/CFS. FM is the more "acceptable" label.

    The symptoms you describe:

    "When i wake in the morning, i have the usual fatigue, but i experience a strange weakening, tingling sensation in my legs. It feels disabling and almost like it is impossible to move them, until i try. Also, the neck pain has gotten worse and it presents with a headache that relieves if i put lots of pressure on it with my fingers. The pain seems to radiate to my eyes, forehead and cheek area when i put pressure on it."

    are typical of people with FM. What you are doing when applying the pressure is known as accupressure and is quite effective in reducing the higher levels of pain. Fibromyalgia is associated with significant "trigger points" these usually coincide with these pressure points. The pressure point themselves are known points of neuromuscular tension and pressing on them for several minutes does reduce the tension in them so often relieving some of the pain in the areas "served" by the pressure point. These pressure points always occur in pairs (one of the left side and one on the right side) A very common pair of points causing headache are found just under the protrusions of the back of the head (sub occipitus) going onto the neck. By pushing firmly up onto the bone increased pain will be felt. Adjust the pressure so it is bareable then increase the pressure as you are able. You can get all these pressure points from books on pressure points available online.

    Secondly the early morning is the worst time for people with FM. At this time people suffer stiffness, sometimes causing them to shuffle or even fall over. In this case it is necessary to exercise a little on the bed first or to rise then lean against the wall and stretch a little before walking.

    The tingling is also typical of FM. Like Jam said this is most likely alleviated by taking magnesium 400mg in the form of magnesium citrate or magnesium glycinate. However you are unlikely to eliminate this morning problem completely rather to reduce it significantly.

    Continue reading the posts here and in particular look up the mitochondrial recovery regime as seen on the home page items.
    Nin B likes this.
  9. IanH

    IanH Active Member

    You are partly correct in historical terms to refer to fibromyalgia as a rheumatism, Rheumatism is a vague old term.
    In medical terms there is no such illness as rheumatism. Fibromyalgia seems to have been described centuries ago but again we are only fitting vague descriptions with vague diagnoses. However the clarity about the condition is only very recent. Even 20 years ago the condition was confused with arthropathies and Rheumatologists were diagnosing the illness on the basis of tender points. More recently the American Rheumatological Association has admitted that people can have FM without clearly defined tender points and that they are not to be used in diagnosing the condition. Because FM manifests mainly as pain in the innervated "soft tissues" of muscle, tendon and fascia it was the domain of the Rheumatologist.

    (soft tissue is connective tissue such as tendons, ligaments, fascia, skin, fibrous tissues and non-connective tissue such as muscles, nerves and blood vessels)

    More recently we see that in people with the condition (and no other arthritic pathology) the other "soft tissues" are also involved. Additionally the brain and central nervous system are significantly involved and seem to be the source of hypersensitivity. So the illness has come to be referred to as a central sensitivity syndrome. It is true that many people with FM have a hypersensitivity to pain (ie a lower pain threshold) but NOT ALL. Because of this hypersensitivity it would be wrong to say that FM is rheumatological, ie it is more neurological.

    The problem here is that the condition was first defined on what appeared to be the symptoms: pain in muscle and tendons. We now see that it involves much more than that and that these muscle/tendon pains are just one of the symptoms. In particular the neuro-immune basis of the illness is becoming clearer and more and more the compartmentalization to rheumatological is stifling research. I am very pleased to see many now including FM and ME/CFS together because FM is most often a symptom of ME/CFS and from what we see FM is more associated with ME/CFS than any form of rheumatological illness. Of the boundaries I am taliking about are very recent. Most general medical practitioners know very little about the immune system. It is the hardest of subjects to learn and even harder to apply clinically. Also immunology has far outgrown its roots in allergy and infection to include all cyto-chemical messaging.

    There sems to be a connection of fibromyalgia with arthropathies in that when both are present the pain from the arthritic condition appears to be worse. There is a possibility that chronic arthritic pain in some people does trigger fibromyalgia ie a widening of the pain but it is still not fibromyalgia unless the pain is widespread and bilateral and bears no relationship to the arthritic pathology. eg if the person has major arthritis in the hips and then gets pain down the legs, this is not fibromyalgia. Or if they have spinal stenosis in the neck and gets pain down their arm(s) this is not fibromyalgia. Despite this, some people are being given the label FM under these conditions. To me and my colleagues this is a way of avoiding the costs of investigation.
  10. Darrae

    Darrae Member

    Hi all,

    I firmly believe there is "connection" between FM and thyroid function. I have read several studies specifically regarding this subject. My FM also landed on me prior to my thyroid being diagnosed and treated. I will also say that joint pain does come with fibromyalgia. FM involves all the connective tissues: Tendons, muscles and ligaments. Everything that holds your body together. You will find all of these in your joint areas. The bulk of my chiropractic adjustments is having all my joints adjusted, trigger/pressure points, and spinal adjustment.

    First and foremost, when I was diagnosed I had all 18 painful points of the 18 points that they check to make a diagnosis already. The Rheumatologist told me this disease was not progressive. According to the Mayo Clinic report I read, she's wrong. It is progressive. I can attest to that first hand. I've had this since 1995. The first of my tendons to go were the plantar facia tendons in my feet. (Even though for six years I was totally disabled and did not work, and was not on my feet all the time). Next came knee joint difficulties and ankles swelling out and in need of adjustment on a regular basis as I began to get back into the work force. (This swelling is not edema, it is muscle tissue that is so inflamed that it actually swells). My M.D. has confirmed this and is in complete agreement with that assessment. I've had painful difficulties with my collar bones and shoulder joints staying in place, as well as elbows, wrists and even toes. Right now I am battling the painful decline of my achilles tendons. So yes, there is pain in the joints with this condition.

    As I've mentioned, I work a 40 hour plus O.T. job. This is not easy by any stretch. Therefore, unlike many who have the same condition and no longer work, I push this body much more than your average FM sufferer. Hence my neverending research for relief in any form. The good news for me, is that my M.D. is "on board" with my homeopathic approach. Last time I was in, he looked at my two boxes of supplements one by one and said, "You might want to double up on this one". His office is located in the building right next to my local hospital which added a homeopathic wing about five years ago. Most of the doctors here are recommending homeopathics and supplements more and more.

    And, yes, I am highly sensitive to light, smells, and loud or repetetive noise. (Prolonged loud noise has been known to send me into flares involving very painful muscle spasms and range of motion issues). I do suffer cognitively more some days than others. However, in my job, I have a great deal of minutia to remember on a daily basis. I am an Activity Director at a Senior Residence, responsible for calendar planning, balancing activity programs, remembering which people participate in which activities, remembering birthdates and Move In dates, remembering their room numbers and phone numbers, scheduling entertainers, (up to 16 per month both volunteer and paid), and keeping it all straight when planning each monthly calendar, keeping track of talking book information, radios for the blind, shopping excursions and purchasing orders for those residents who do not go along. I'm responsible, also for the monthly newsletter. The list of things I need to remember daily goes on and on. When I am experiencing a pain "flare" it gets much more difficult to focus and remember things. Hence, I am the "post-it" queen at work. I do believe that because my job is so intensly based on having to remember, that it's good for my cognitive issues. I feel that some improvement has come with having to "work" the mind and force myself to cope and overcome my cognitive issues as much as possible. I still have days where I announce the wrong date over the P.A. system however! LOL o_O

    Dar
    Last edited: Dec 23, 2013
  11. Darrae

    Darrae Member

    Jamin,

    I feel for you. I was put on antidepressants too. (Which made me suicidal so I quit taking them!) My mother, father, sister, brother, neice, and one daughter are all on synthroid, or were. My parents have passed away. My youngest son, I was told by our herbalist, has the "propensity" for a low thyroid as well. You'd have thought, when I mentioned this to umpteen docs over a 10 year period, (Regarding mom, pop, sis and bro at the time), that it would have been looked into more seriously! The neice, daughter, and youngest son's info came later. This is a "genetic" pattern if ever there was one.

    When I was dx'd with FM in 1997, (after two years of going through every test known to man and being offered no pain control whatsoever), I felt so helpless and hopeless. I was even endoscopied! I was sent to an oncologist! Who had the nerve to suggest it might be "all in my head". Needless to say I told him, "Don't even try to go there"! "I have seen the shrink, and he has seen me". "I have been pronounced psychologically fit"! "If I suffer any depression, it is normal under the circumstances"! "You've eliminated bone, blood, and organ". "I've said all along this feels like muscle, now send me to someone who knows about muscle"! "But do not dismiss me as a nut job because you don't have the answer"! Fifteen minutes with the Rheumatologist, and voila! Diagnosis!

    It's no wonder that we search other avenues. The "established" medical profession, as a whole, I do not trust. Wonder why? We have been forced to research our own conditions and, essentially our own treatments due to this condition being viewed as a "non-disease" that they do not understand, and do not have the answers for. I was put on a pain killer and muscle relaxer and told, "This is your life". "You are not allowed to pick up your grandchildren because they are too heavy for you to bear". Are you kidding me?! This was not good enough for me. I was given a life-sentence of total disability and pain with no light at the end of the tunnel. I got angry and deemed that unacceptable, took control of my own life, health and care, with the attitude that I would never give up, and lit my own light.

    The only reason I can work as I do is because of the balance I've achieved with the right combinations of care, supplements, and sheer determination not to accept that death sentence. I will fight until I drop before I will be told I cannot have a life. I'm not saying I do not pay a physical price. But the price is worth it to me. I have come very far. And I will go even further as I continue to research and connect dots. I will not, however, ever give up, roll over, and accept that there are no answers. There are always answers if one knows the correct questions to ask.

    We have been "conditioned" to accept doctors as "demi-gods" who are all knowing. They do not know all. Ancient civilizations were way ahead of the game lifetimes before our "Pharmacological" society was born. Manmade drugs have their uses to a certain extent. But they do not cure all. And they have side effects. When you have an already slow thyroid, many of the pain drugs, antidepressants, and muscle relaxants exascerbate our conditions by slowing down our metabolisms even more.

    My advice to anyone with this condition is, research, learn, know your body and every facet of every condition you have. Most of us have other conditions that run along side it that must be taken into account when seeking viable answers and modes of treatment. And, most importantly, fight! I shall now, step off my soap box. Sorry bout the long diatribe. But I know I am not the only sufferer who has experienced this story.

    Love, Life, and Healthier tomorrows to all.
    Dar
  12. Darrae

    Darrae Member

    Thanks Jam.
    You're right. Thyroid function is critical. If it's not optimum, the entire body is thrown out of whack. And, yes sluggishness, tiredness, weight gain, leg cramps, cold extremities, and dry skin are a dead give away. Untreated, depression finds a window. I was in my 40's when I finally got a G.P. who would listen and acknowledged that I knew my own body and that my family "genetics" alone warranted the TSH test. I knew before the test was run what the results would be. I had a whole family of thyroid starved people in my life, knew the symptoms, had the symptoms, but had to find an M.D. worth his salt. My older sister is on complete thyroid replacement. In her 20's she had thyroid cancer and the entire gland was removed.

    Oh, and today my oldest son who is 40 told me he's just been dx'd as well with hypothyroidism. I've been begging him for 3 years to get tested. He's been depressed, cold all the time, tired, and suffering from dry skin and leg cramps. Big surprise.

    When I was in my 30's the docs put me on Ativan for depression. It made me suicidal. It did the same thing to my oldest daughter. Why? Because the depression was thyroid-based.

    I'm off for 3 whole days for Christmas Holiday. Today we went to my youngest daughter's for our family celebration. I've acquired the beginnings of bronchitis due to the extreme cold conditions we've been experiencing here and, again, a family propensity to bronchitis. But I bundled up, donned a "mask", medicated, and waited until the car was warm before venturing out. Tomorrow, it's the "sack" and remote for me for the whole day with the vaporizor going.

    You stay well and take it easy too.
    Hugz,
    Dar
  13. Nin B

    Nin B Member

    Wishing Everyone a Merry Christmas and Happy Holidays

    I"ve not been able to sign in for a couple days and its amazing all the posts i had to try to update myself on. I must say though, they have been very useful. All of the sharing keeps me hopeful and cautious! Thnx.

    I read a few things that sparked a few questions, Dar mentioned: "I've had painful difficulties with my collar bones and shoulder joints staying in place, as well as elbows, wrists and even toes." I had noticed a consistent pain in my collar bone and shoulder. Then after some time of having this pain, it now makes this cracking sound anytime its immobile for short periods on time. My toes, fingers elbows and knees also do the same thing. I've noticed though, it is worse when it is cold but i don't know if that's a factor.

    Lights, Noise and smell are also a nuisance to me, so my family keeps asking why I'm so irritable (since we're usually a happy bunch). I try to tolerate it, but it is usually too overbearing for me.

    I do want to share something that has helped for me particularly with the pains and headaches...Tumeric seems to make it bearable. I sometimes blend it and dilute it, then put it on the fridge and drink it as I do water. It doesnt taste unpleasant and it helps. Also as a tea, I take ginger and tumeric occasionally.


    Have a pleasant season everyone!

  14. Darrae

    Darrae Member

    Merry Christmas (belated) and Happy New Year (in advance)!

    Nin,

    You will find these forums full of helpful information from so many sources. Glad you chose to come aboard. You are right about the Turmeric. I take it, ginger, and a plethora of other supplements, vitamins, minerals and homeopathics. I only drink freshly brewed tea from fresh tea leaves purchased from a wonderful specialty shop in my area called "Oh Nuts". (How apropos)! I use honey harvested locally, less than 5 miles from my home. Much of what I do, and use, I discovered on my own. Much of what I do, and use, I discovered here in these forums from other sufferers. I have found Rhamadan a very insightful poster. It was his advice that connected some serious "pain relief" dots for me when I was in the worst "flare" I'd been in for over 5 years.

    When I was first diagnosed, and given my "life-sentence", I was directed to "groups". I was not really a "group" sort. I attended a group in the past for a very short span and found it not only lacking, but depressing, listening to people cry in their milk. (And do nothing but cry in their milk and discuss stretching and aroma-therapy). Mind you, these things have their place, but I felt that there had to be more.

    It wasn't until about a year ago I discovered this forum. I was impressed with the attitudes and intelligence levels of the individuals who post here. I was also impressed with the fact that yes, we all whine a little, which is highly acceptable, and finds an abundant outpouring of support. I was also impressed with the fact that it's not the only thing discussed. On "The Porch", we talk about family, books, recipes, daily life, everything from soup to nuts.

    I have found all the forums here most helpful. The research and sharing of helpful information with one another is a huge "boon". The total understanding that you don't find in family, friends, and the general public because they haven't the "ability" to understand. They've never "felt" what we feel. They've never experienced it. This helps one to feel like, "I'm not nuts, other people feel this"! "I'm not alone, other people deal with it"! How hugely "liberating"! Not only do the individuals here "get it", they are more informative, helpful, insightful, understanding, educated and educating than anywhere else I've searched. Hats off to all!

    A hint: Take the turmeric in combination with the ginger, cranberry tablets and cinnamon. I have found all of the above in capsule form, (watch additives and look for purest forms), due to my hectic schedule. You may also want to look into magnesium. Do a little online research.

    Have a Happy! :)
    Dar
  15. Darrae

    Darrae Member

    Hi Jam,

    It's okay to feel sorry for you once in a while. We all have those moments. Your daughter's chicken soup sounds so good right now. I'm through the worst end of the bronchitis. Made for a rather miserable Christmas. But, at least I got to spend it with family (enmasked). I envy you your 70's weather!

    We have a few odd genetic anomalies in my family. Thyroid is only one of them. (The number just increased as my oldest son informed me at Christmas he is newly diagnosed.) Hiatal Hernia---Grandmother, father, both his sisters, my sis, my bro and me (7 ), Heart Disease--All grandparents, both parents, both sibs and me (9) known, Diabetes---Mother, her sis, my sis, my bro, my daughter, my one son on his way, and I'm hypoglycemic (7), Cancer---Grandmother, father, sister, daughter (4) known. I have so many diseases to choose from! As it stands now, I already have the Hiatal Hernia, Thyroid, Heart Disease and am Hypoglycemic (which could flip at any time as my sis's did).

    The average age of death in my family is 72 or earlier. I figure, with luck, I got at least 12-13 years before something takes me down. (Be about my luck, it'll be a City Bus! :D LOL). I do take grapeseed extract, (It comes in my wine extract capsules--can't drink that glass of wine daily, YUK!) I'm out in the elements way too much, and I work in a "germ infested" environment. Health care is the best place to find ill health! o_O The good news is, I do not find all this depressing! Some might find my sense of humor about this on the morbid side.

    Having worked so long watching people live long past when there used to be quality in their lives, has made me fear not. I only fear living past the point where quality of life no longer exists. My POA has instructions that if I no longer recognize family or friends, or can no longer communicate---PULL THE PLUG! I figure each year that I enjoy quality of life is a year worth having lived. So I throw myself at life full tilt, look for answers to improve the quality of life I have, and relish each single day!

    Thanks for the well-wishes. They are always appreciated. Have a Happy New Year!