Fibromyalgia is not a disease, it is a syndrome and there has to be a cause. This is a catchall diagnosis and not really getting to the root.
Well, yes… the problem is there are a ton of people with the same symptoms, and nobody can FIND a cause.
OP, I’m in a similar boat, but without the weight loss, mainly because I eat to try and keep my energy up, (and because it makes the pain recede a little) hence, I’ve GAINED 15 lbs. (ugh) My doc was leaning towards Ankylosing Spondylitis, but then my labs came back sediment free, so… the next step was x-rays, then after she reads them, probably a trip to the neurologist.
I had my appointment on Wed, and was complaining about weakness in my lower back and legs (to the point of having to get off my horse the day before because I was only keeping myself on with upper body balance, and while she’s a saint, she’s still a three year old filly)
my doctor wrote in my file “patient is a fall risk” and I thought: “I am NOT! I am a healthy 36 year old woman who has a little weakness and pain, that’s ALL!”
Then the next day (Thanksgiving) I went with some friends to see The Martian, and fell down the steps of the movie theatre afterwards because… well… ye olde legs didn’t work right.
Sigh. Hang in there. Keep us posted.
Yes, upper body stiffness/pain/nerve-like issues can be attributed to thyroid disease. I had it for a long time too, and now it is almost gone once I added T3, liothyronine, instead of just going with the typical levothyroxine. My body temperature improved, too.
ANY doctor, PA, RN, MD, ND…can order tests, they just have to place the order. Ask for the tests. Sounds like you might have your answer, if in 2009 you were “borderline” (borderline what?), plus thyroid diseases are hereditary and you have a large goiter (thyroid problem). And now you are really feeling sick. What did they find on the ultrasound? Not sure what your swelling up and down means…but you need a updated ultrasound and biopsy if you have suspect nodules, to see what is going on and to make sure you don’t have thyroid cancer.
You can be both. Excessive sweating, goiter and weight loss could be Hyperthyroid, like your grandmother.
What B12 deficiency risk factors…like MTHFR? I have never heard of a goiter being a risk factor for B12 deficiency. Could be wrong. Stomach issues and abdominal pain can be caused by thyroid disease, as the thyroid regulates metabolism, digestion, and is affiliated to most bodily functions.
Gluten and gliadin should be avoided with autoimmune thyroid disease, since the structure of these protein molecules closely resemble those in the thyroid gland. They are absorbed in the gut and the body attacks them. Also avoid soy and dairy. Gluten, gliadin, soy and dairy can all exacerbate auto immune response, which could be accountable for many of the symptoms you are having.
I was labelled as having Fibro a few months before getting the proper diagnosis. I didn’t “settle” for this catchall diagnosis (as Calamber said), since I needed to know the reason for my symptoms, not just stop there. I knew there was a cause, so I kept looking until I found the answer. I’m so glad I didn’t settle for the Fibro or the silly “your just depressed”-take-this-anti-depressant diagnosis. Can’t imagine where I’d be now if I’d have believed that was it.
[QUOTE=propspony;8418756]
Well, yes… the problem is there are a ton of people with the same symptoms, and nobody can FIND a cause.
OP, I’m in a similar boat, but without the weight loss, mainly because I eat to try and keep my energy up, (and because it makes the pain recede a little) hence, I’ve GAINED 15 lbs. (ugh) My doc was leaning towards Ankylosing Spondylitis, but then my labs came back sediment free, so… the next step was x-rays, then after she reads them, probably a trip to the neurologist.
I had my appointment on Wed, and was complaining about weakness in my lower back and legs (to the point of having to get off my horse the day before because I was only keeping myself on with upper body balance, and while she’s a saint, she’s still a three year old filly)
my doctor wrote in my file “patient is a fall risk” and I thought: “I am NOT! I am a healthy 36 year old woman who has a little weakness and pain, that’s ALL!”
Then the next day (Thanksgiving) I went with some friends to see The Martian, and fell down the steps of the movie theatre afterwards because… well… ye olde legs didn’t work right.
Sigh. Hang in there. Keep us posted.[/QUOTE]
the falling is scary! Please be careful. I hope you get your answer soon. I didn’t have falling, but I did have episodes of arm and leg weirdness…nerve issues, numbness, toe and finger spasms, leg and arm pain. I saw neurologists, neck surgeons, had two epidural shots in my neck, and electro nerve study. Weakness, fatigue. Weight gain. In the end, so glad it was just my body trying to kill off my thyroid. The lab tests and the medication are very inexpensive, compared to what I’ve spent on the wildly expensive goose chase of getting a proper diagnosis.
By chance did you get a full thyroid panel, to eliminate that that is not an issue?
[QUOTE=Calamber;8418657]
Fibromyalgia is not a disease, it is a syndrome and there has to be a cause. This is a catchall diagnosis and not really getting to the root.[/QUOTE]
Exactly. And if a person happens to have MTHFR, this gene mutation is affiliated with Fibromyalgia and Fibro-like symptoms. That alone could be the cause of their Fibro, among other things.
Right, Color Light, that is a really insightful story. I have to pursue getting my thyroid “properly” read, I have a bunch of other issues, Lyme, was mold and lead poisoned, but I know I have a thyroid issue because I have weight gain, temperature issues and I am just plain too tired.
A severe vitamin D deficiency caused me to have the symptoms that were originally described. Now having a tough time dealing with the weight gain & weakened muscles that I’m left with.
Thank you all for all of your suggestions. I have beaten down every door I can think of so far. Thankfully, my MRI is clean (no brain tumor), but unfortunately the cervical MRI was also clean, so there is no cause for my upper body weakness.
I was referred to another Rheumatologist (I’ve gotten good at spelling this word) by my neurologist and will be going to see her on Monday (because I wasn’t sure I’d be alive in Feb for that appointment with the other one). Thank goodness my neurologist has an in-house Rheumatologist. I have a feeling I am going to have more test that I can possibly imagine run on Monday at the in-house lab. The Western Blot came back “normal”, but I’m confused if that is really a result so I may ask for the other test if that is a possibility.
I’ve had to stop taking the Vyvanse because that can cause rapid changes in blood pressure that can cause you to pass out. And I haven’t had a “near fainting” episode since. But it’s strange that I’ve been on it for so long and suddenly it is causing all these symptoms, no other changes except weight. Absolutely frustration, I want what was left of my brain back.
Especially now that my horse has been deemed a nuisance and I have to find her a new barn. And, due to lack of hay fed, she has ulcers (thus precipitating the naughty behavior that is getting her kicked out in the first place). So mad, different rant.
I just want to be healthy. More normal results and I still feel terrible. Can I start cursing yet? *!@% this.
Sending hopes that things straighten out for you soon
It is so frustrating to be sick in not have a answer. I am in a similar boat. It is really hard. I am sorry. I have a lot of suspect things at the moment but no specific answers.
I am driving five hours to see him a doctor in Portland, as U of W will not see people with suspected HEDS, because “getting diagnosed is not helpful”. I have been dealing with severe chronic pain for a long time. Dislocations and subluxations. Frequent GI upset. POTS. Among other issues. I have scoliosis, a bulging disc and arthritis. Ulnar nerve neuropathy… etc! I also had severe pneumonia this summer which resulted in five days in the hospital. It has definitely triggered a lot more issues, including POTS. Saw a new rheumatologist a few months ago and she was really good. They spent nearly two hours with me and really listened. She couldn’t give me “official” diagnosis, but she said that she is fairly certain that I have EDS.
I also suspect MCAD. We are thinking this a possibility as well. I have random hives, flushing, constant nausea, dizziness, water is a major trigger for my hives (shower, the ocean, lakes) it really doesn’t matter. I had a Tryptase which came out normal, which is the norm from what I understand? Among other blood work.
It is so frustrating to constantly have stuff come back normal or be entirely dismissed by doctors. I will say just keep pushing. YOU and YOU alone know your body best. No one else but you. You know when something is wrong. Keeping fighting for the answers. Doctors do not know everything.
A Letter to Patients With Chronic Disease
Dear Patients:
You have it very hard, much harder than most people understand. Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like. How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like? How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue? How do you decide when to believe them or when to trust your own body? How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?
I can’t imagine.
But I do bring something to the table that you may not know. I do have information that you can’t really understand because of your unique perspective, your battered world. There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you. It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past. It may not seem important, but trust me, it is.
You scare doctors.
No, I am not talking about the fear of disease, pain, or death. I am not talking about doctors being afraid of the limits of their knowledge. I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job. We are not special. In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help. We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.
But chronic unsolvable disease stands square in our way. You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you. We don’t want to face things we can’t fix because it shows our limits. We want the miraculous, and you deny us that chance.
And since this is the perspective you have when you see doctors, your view of them is quite different. You see us getting frustrated. You see us when we feel like giving up. When we take care of you, we have to leave behind the illusion of control, of power over disease. We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress. You are the rock that proves how easily the ship can be sunk. So your view of doctors is quite different.
Then there is the fact that you also possess something that is usually our domain: knowledge. You know more about your disease than many of us do – most of us do. Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain - is something most of us don’t regularly encounter. It’s something most of us try to avoid. So you possess deep understanding of something that many doctors don’t possess. Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease. It’s like a parent’s knowledge of their child versus that of a pediatrician. They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.
So when you approach a doctor – especially one you’ve never met before – you come with a knowledge of your disease that they don’t have, and a knowledge of the doctor’s limitations that few other patients have. You see why you scare doctors? It’s not your fault that you do, but ignoring this fact will limit the help you can only get from them. I know this because, just like you know your disease better than any doctor, I know what being a doctor feels like more than any patient could ever understand. You encounter doctors intermittently (more than you wish, perhaps); I live as a doctor continuously.
So let me be so bold as to give you advice on dealing with doctors. There are some things you can do to make things easier, and others that can sabotage any hope of a good relationship:
Don't come on too strong – yes, you have to advocate for yourself, but remember that doctors are used to being in control. All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion. That's a good thing in the long-run, but few doctors want to be greeted with that reality from the start. Your goal with any doctor is to build a partnership of trust that goes both ways, and coming on too strong at the start can hurt your chances of ever having that.
Show respect – I say this one carefully, because there are certainly some doctors who don't treat patients with respect – especially ones like you with chronic disease. These doctors should be avoided. But most of us are not like that; we really want to help people and try to treat them well. But we have worked very hard to earn our position; it was not bestowed by fiat or family tree. Just as you want to be listened to, so do we.
Keep your eggs in only a few baskets – find a good primary care doctor and a couple of specialists you trust. Don't expect a new doctor to figure things out quickly. It takes me years of repeated visits to really understand many of my chronic disease patients. The best care happens when a doctor understands the patient and the patient understands the doctor. This can only happen over time. Heck, I struggle even seeing the chronically sick patients for other doctors in my practice. There is something very powerful in having understanding built over time.
Use the ER only when absolutely needed – Emergency room physicians will always struggle with you. Just expect that. Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home. They might not fix your pain, and certainly won't try to fully understand you. That's not their job. They went into their specialty to fix problems quickly and move on, not manage chronic disease. The same goes for any doctor you see for a short time: they will try to get done with you as quickly as possible.
Don't avoid doctors – one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address. I can't work that way, and I don't think many doctors can. Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made. It's OK to keep a list of your own problems so things don't get left out – I actually like getting those lists, as long as people don't expect me to handle all of the problems. It helps me to prioritize with them.
Don't put up with the jerks – unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you. Some docs are not cut out for chronic disease, while some of us like the long-term relationship. Don't feel you have to put up with docs who don't listen or minimize your problems. At the minimum, you should be able to find a doctor who doesn't totally suck.
Forgive us – Sometimes I forget about important things in my patients' lives. Sometimes I don't know you've had surgery or that your sister comes to see me as well. Sometimes I avoid people because I don't want to admit my limitations. Be patient with me – I usually know when I've messed up, and if you know me well I don't mind being reminded. Well, maybe I mind it a little.
You know better than anyone that we docs are just people – with all the stupidity, inconsistency, and fallibility that goes with that – who happen to doctor for a living. I hope this helps, and I really hope you get the help you need. It does suck that you have your problem; I just hope this perhaps decreases that suckishness a little bit.
Sincerely,
Dr. Rob
See more at: http://www.healthcentral.com/chronic-pain/c/5949/161596/patients-chronic-illness#sthash.dGhSExZF.dpuf
These are the guidelines from the ILADS group. “International Lyme and Associated Diseases”". Take special note of the diagnosis section and go over that with your doctor.
I didn’t rea the whole thread, so if someone suggested this, I’m redundant, but do ask a neurologist, whom you should have been seeing already with these symptoms, but do get tested for MS. The onset can be similar.
Obviously there are many things which can present like this, many, so hopefully a neurologist will help you out.
Than you all so much!
MustangSavvy- that letter was spectacular. It’s definitely a good reminder. It’s hard to remember that all this “baggage” can be perceived as intimidating to a doctor.
So far:
MRI (head and cervical)- Negative
Western Blot- Negative (I know, I know, not the best test)
Once I knew my neck wasn’t injured I went to see my Chiro and she made all sorts of concerned grumbles as basically every joint in my body cracked. She did release quite a bit of the tension in my neck.
I’m also waiting to receive a book on treating EBV as a chronic disease as opposed to a “once and over” virus. So I might be eating healthier foods to be healthy.
At this point I’m basically grasping at straws, but I’m hoping to get down to a small list of complaints that point to one concise diagnosis.
My Conductive Nerve Study is on Friday. Oddly, I’ve had a bit more energy lately, thank goodness. Not going to ask questions, just going to take advantage and love on my pony.
I’m so sorry to hear that you are still dealing with this. I to suffer from almost the same symptoms and I got so tired of trying to figure d a dr who would diagnose me, I stopped asking. Instead, I call it “the disease of the day” club and I’m a proud card carrying member.
I got gene tested, had food allergy testing, MRI’s, had all my metal filling removed, had my hormone levels tested, did multiple detox diet cleansing, went to holistic approach, chiropractic, acupuncture, yoga, meditation, Infared saunas, inclusive health practitioners, rheumatologist, psychologists, neurologist. I ran out of doctors and specialists so I am just trying to survive day to day.
If I were in your shoes, I would look into food allergies, get tested for parasites, and candidiasis. Thyroid, adrenal and b-12 too. If you’re in NC, it’s not going to be easy but you can message me if you want the name of a few hrs to go to a d to run away from.
Do not give up hope. There is a balance out there and specific changes to your diet etc will help.
Good luck!
Lyme.
Find a doctor who has experience with Lyme. There are MANY in northern Virginia.
OP if you are in MA go to Francis Holistic Medical Center - Dr Lacava in West Boylston.
http://www.francisholisticmedicalcenter.com/
He is a real MD so don’t get scared by the ‘holistic’. He was an engineer who decided to be a Dr and is a fantastic diagnostician. He is an environmental doc and was able to determine my serious and chronic illness was gluten intolerance after years of being either misdiagnosed or alternately having Dr’s just write me off as a psych case as I had so many issues that seemed a moving target none of them knew what to do with me. Among my issues were extreme fatigue, brain fog, heart palpitations, balance issues, joint pain, muscle pain, very irritable bladder - up literally every 25 minutes all night peeing a teaspoon, bowel issues flipping from constipation to diarrhea with periods of normalcy in between, back pain, excessive sweating, symptoms of reynaud’s, full body hairloss, insulin resistance and weight gain, did I mention brain fog? serious memory issues, tendinitis…the list goes on and on and on. Most docs wanted to put me on antidepressants and then once I did that many docs afterwards seemed to see me as a psych case.
Then Dr Lacava saved me. I test negative for celiac but am most certainly very sensitive to gluten and when I removed it from my diet ALL of the above symptom resolved with the exception of the insulin resistance - all resolved except for what seems lingering, permanent damage - some neuropathy left in my feet and the hair loss. But all that stuff above? Gone. Even my seasonal, hayfever type allergies improved. My asthma went away 100%.
He ran a lot of tests, some of which I had to pay for out of pocket - but he tested everyting - thyroid, cortisol levels, lyme, vitamin deficiencies, heavy metals toxicity. He will also test for RA markers and all sorts of stuff the specialists will test for, if he diagnoses something like that then he will likely at least send you to the appropriate specialist.
He’s a bit of a nutjob…kinda moody, mad genius. His office looks about 50 years old, old equipment, low budget. But he is totally worth it if he can pinpoint the issue.
Glad MRI and lyme are negative. You are still grasping at straws…so frustrating!!
Might of missed this part, or maybe you didn’t post results…what were the results of your thyroid panel? And thyroid ultrasound for the large active goiter (that alone usually makes doctors very concerned)? Given your large goiter that goes up and down (yeek! never heard of this, what did doctors say it means?), being “borderline” (for thyroid disease or?? Not sure you ever said), your family members having thyroid disease, and all of your symptoms which sound hypo…I’m hoping you’ve been tested by now to eliminate that thyroid isn’t cause of all your extreme symptoms?
ADHD is often misdiagnosed for thyroid issues. Your ADHD medication, Vyvanse, can cause the problems you mention, including nerve issues. If you do have a thyroid problem and take ADHD medicine, this can lead you further into adrenal issues and contribute to fatigue. Especially if you are not taking thyroid meds to regulate your thyroid. Vyvanse is also contraindicated for thyroid problems, if you happen to have one (goiter). Not sure about other ADHD medications. Letting you know…in case this info is helpful.
EBV (virus that causes mono), CMV (related to chickenpox, mono, herpes simplex) often lead to auto immune disorders, if immunocompromised. Thyroid disease is one of them.
I had nerve study done early on too, negative. You might have more energy because of stopping the Vyvanse. No longer draining adrenal system.
Ask the Rheumatologist about Polymyalgia Rheumatica. It took nearly a year for me to get diagnosed with that. Extreme muscle pain, fatigue, anemia, high fevers, huge weight loss. Prednisone is the silver bullet 
!
Thyroid was normal Colors.
The rheumatologist diagnosed me with “soft tissue rheumatism” because I have symptoms of both wide spread bursitis and muscle pain.
Not exactly an answer, especially since after all that I was told to take an NSAID to help ease the discomfort.
I have an appt with a neuropsychologist to test my brain some more.
My blood work is all normal.
