Hi, I'm Tiff, and I'm new here. Literally I joined two minutes ago.
I am a 19 year old female who has been diagnosed with Fibromyalgia. When I was 15 I noticed a lot of joint/muscle pain but never thought much of it because I never really thought anything was wrong with me. I was 15, you know? Well, at 17 I was diagnosed with Fibro. I tried various treatments — injections into my muscles to help the pain, lots of Tramadol, lots of Cymbalta, lots of natural remedies like Epsom salts and that kind of thing. I even went to physical therapy. That only seemed to make it (what this is) angrier. I ended up seeing a rheumatologist who tested my blood and urine for lupus. My first ANA tests came back literally ONE POINT under the "normal limit" so she retested to make sure there was a "fluke in the lab" and they came back LITERALLY ON THE BORDER LINE ONE POINT ABOVE WHAT THE ORIGINAL TEST SAID. So because of that she sent me home and told me to come back if it got worse. I switched care providers and have since sought a second opinion. I understand that this diagnosis is a year long process, I get that now. But I don't have the butterfly rash. I have little pimple like patches of red that itch EVERYWHERE on my body except my face. My join/muscle pain has gotten so bad that even a 4 hour shift at work leaves me wanting to take a narco that an ER doctor gave me because my chest hurt so bad one morning that it made it hard to breathe and then the migranes started and then the low grade fevers started. I hit my face on a pole the other day at work and wound up sweating profusely IN THE FREEZER at work. (I work at a deli.) Then the mirgrane from Hell came. My hips didn't use to hurt but now they do. I crack joints just by standing up or turning on my side. I cry from this pain on a day to day basis and fight not to take medication because of what the Tramadol did to me when I did take it. Lupus doesn't run in my family and the one doctor I saw thought it might be drug induced, which I have also read up on. I also am really prone to yeast/uti infections that I get at least once every 2 or 3 months. It used to be once every 6. I had to change my shampoo to some super organic stuff. It's not even shampoo. Its a cleansing conditioner. Any other one literally makes my hair fall out in clumps. I have to use eczema bath wash now from Aveeno because if I don't I get those red bumps that itch in HUGE quantities. They haven't gone away but they've gotten a little smaller. My kidneys and liver tests come back fine. I test negative for RA.
Does anyone know what the Hell is going on? I am so scared. I am 19 and I can't even live my life. I can't even work without coming home and feeling like I'm a 95 year old woman. My insides feel so sore from nothing. I can't even open a can with a can opener without crying. I don't know what to do or who to see. No one wants my HMO. Please. Anyone, someone, SOMETHING, please - answer me. I've been waiting too long.
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I also wanted to add that if anyone has insight on test results that would be greatly appreciated as well. I have had two sets of lupus testing done within the last two years and am about to start my third.
Hi, that sounds tough, firstly has anybody in your family past and present got any autoimmune diseases including thyroid? Has anybody has a lot of miscarriages or heart attacks or strokes at an early age. Or very bad migraines with funny events attached to them.
Thyroid problems run on both sides of my family and I know for a fact that my grandmother on my mom's side had fatal heart problems and died of a stroke at an old age. Migraines have never been an issue - headaches never really happen unless they do something to their heads or faces. No early age health problems presented themselves for anyone in my family except myself. I've fought my way out of a very violent battle with bulimia and drug addiction and my mother had me on literally almost every medication you can think of for my mental health disorders from ages 12 to 17 until I finally told her no more and that I was done. At that age I was legally allowed to tell her I was refusing care under her direction. She's mentally unstable and I needed to be able to make my own choices for my body but now I don't know what those choices even consist of. I'm not sure about the miscarriages but I know my grandmother on my mom's side also had an ectopic pregnancy when she was around 30 or 40 years old.
ok, well the fact that so many people have a thyroid problem in your family is the clue. Mental health problems can be very prevalent when somebody's thyroid is not adequately treated. Unfortunately in the UK, in the main the only test done is a test called the TSH, and it is not a very reliable test, sometimes they test for thyroid antibodies also.
A lot of people end up having to have private thyroid tests done, I do these they are very detailed and show a problem up more clearly. Unfortunately as these tests are not done routinely many slip through the net and get told they have 'Fibromalgia'. Another thing is to make sure the rheumatologist checked your vitamin D, it should sit at 75 above, also that your B12 and Iron was checked.
The blood tests I do are recommended by Thyroid UK, which is a fantastic charity, and they have a forum on here, on this same platform. Through one of their recommended testing centres I do the Thyroid plus 12 or 15.
If you read their charity website it lists the symptoms for being either under active - hypo thyroid or over active - hyper thyroid.
My tests for RA came back negative every time and they did a thyroid check once and everything came back fine. They kept saying I was fine, fine, fine, that it was just stress but it's been 2 years since that and everything has gotten worse. I do have a Vit D difficency and am severely anemic. I have gastritis so I can't take pills because they literally tear up my whole stomach — at the ER they give me everything through an IV. My ANA test panels came back as follows:
March of 2016:
ComponentValueRef Range & UnitsStatus
Anti-ssDNA136 (H)0-99 units/mLFinal
Result within Equivocal Range 100-200 units/mL
Anti-dsDNA44 (H)0-40 IU/mLFinal
Result within Equivocal Range 41-80 IU/mL
January of 2016:
Component Results
ANTINUCLEAR ANTIBODIES DIRECTPositive (A)
Those were the only results both specialists ever wanted to talk about.
when your iron is low your thyroid can't take up the thyroxine in the body natural or other wise, vitamin D deficiency will make you feel awful. What I was trying to tell you is that the thyroid tests on the NHS are very very narrow, which is what happened to me, I saved up and did about 15 private ones which showed up that I had a thyroid disorder. Your specialist will NOT have done the thyroid tests I mention, it is very annoying that they don't but that is the same across the UK. MaryF
If they're that expensive I might not be able to afford them for years to come. I'm a neuroscience major and haven't even finished premed yet. Not to mention I have an HMO not a PPO so I can't just go in and say, "Hey here's money, do this." American health insurance policies are the worst.
Your best bet is to join the Thyroid UK forum on here as well as this one, they will say similar to what I have said, but they really know their stuff on there. MaryF
Only wanted to say I really recognize the daily crying with the pain, and feeling like you can't possibly live like this. I was like this all of last summer and on and off for two years. The best advice I can give you is to approach medical appointments and doctors with 'please treat my symptoms and improve my quality of life' rather than 'find out what the diagnosis is'. I was doing the latter for a long time, then as soon as I relaxed about the actual diagnosis (on reading the average diagnosis time is SEVEN YEARS!), and focused on the former, I seemed to get much better results and help from doctors. I think they panic when a patient presents with symptoms they can't get to the bottom of, so their ego starts doing the talking. Whereas if you ask them to help you with the pain and improving your quality of life, that's something they can in theory 'fix'. Once your pain is under better control it is that much easier to deal with the ongoing trials of having no real diagnosis. Also, keep trying doctors until you find one you feel understands what you're going through - the time and effort will be worth it. Lots of love xx
Hello and welcome. I've nothing really useful to add but I wanted to say that your posts are very articulate and you clearly know a lot and have had to cope with a great deal at a young age.
I'm no expert because I have Sjogrens and Hypothyroidism rather than Lupus - but having a slightly raised anti -dsDNA is a specific pointer to Lupus I believe and your ANA is positive. Perhaps you could get the numbers on your +ANA and then keep getting tested regularly because these numbers can show up equivocal for a while before turning clear positive as the disease manifests in your blood more clearly.
Also I would ask if your Sed rate/ ESR and CRP have been checked as well as getting copies of all your lab results if you can. This way you can monitor them yourself.
I wouldn't read too much into autoimmune family history or lack of it. Other environmental factors can trigger autoimmunity - chemicals and interventions that take place during pregnancy and during infancy can play a triggering role. I have no real history if autoimmunity but I can trace mine back to formative events that took place when I was a baby.
Some people find eliminating all gluten from their diet helps a great deal and also making sure your B12 and vitamin D levels are optimal. Keep searching for answers and don't allow your history or age to cloud a doctor's judgements if possible.
Be as calm and articulate as possible at your consultations so that they can focus on the present and future rather than your past. I do hope you can finish your college course, which sounds amazing, and come out very much the stronger person than many of your peers for surviving all of this at such a young age.
One of my daughters has fibromyalgia, she's 55 now. I have unspecified mixed connective tissue disease which brought on pulmonary fibrosis. It is imperative that you find a rheumatologist, it breaks my heart because you are so young, but there is help...this site gives so much help and encouragement. DO NOT GIVE UP! I was diagnosed 2003, then the lung thing 2008. It's a life changing thing, but keeping a good hopeful attitude and finding ways/food to stop inflammation, mild meds for anxiety are key to your well-being.
Maybe it's best to seek another doctor far away or an autoimune doctor. I'm 23 years old I have SlLE lupus. Got it when I was 18 I feel your pain love , I'm sorry and I hope your not alone. I really hope you find out what is happening. I'll keep you in my prayers . IB profin helps me a bit with pain.
So sorry to here you are suffering like this do go back to your gp and ask if they can retest mine was border for Arthritis in 2009 and I was told with in five years I would have to give up work as it would get worse. In 2010 we moved and I registered with a new gp in summer 2012 my new gp did a lupus test which came back positive the doctor had the test repeated and that also came back positive up to then I did not no what lupus was and a lot of the time felt like My gp must think I'm a hypochondriac even my husband at times would say your always ill but finally I had a diagnosis it is tough felling unwell and being in chronic pain I so wish you well but do talk to your gp and if you fill they are not listening ask to see a different doctor there is also a lot of help and advice on this site
Hi I'm in the same position as yourself in that I have been diagnosed with fibromyalgia. I can relate to the itchy spots and pain. Mine all kicked off after surgery. I was given pregablin to take amongst other meds. These made me worse! I have stomach issues too. I've been left six years with no diagnosis as such. It takes time for things to show in bloods. My vit d was low. I take supplements. Restrict my diet and take each day as it comes. I am allergic to lots of things now too. I think for me it was a combination of things but I really struggle to take medication which makes life extremely difficult. Have you thought about seeing an alternative practitioner?
We seem to have a lot in common! I've been ill since I was 12 but things really started getting bad when I was 15 and I have a degree in neuroscience too! (I tell you, it really comes in handy when you're dealing with some of the doctors and having to do your own research because they won't!)
Anyway, I'm 40 now and was only diagnosed with lupus in 2014. The diagnosis only made things worse for me as I took the advised medication and have reacted badly to it. The things that have worked for me are getting to know what works and what doesn't for my body in all aspects of living (food, exercise, cosmetics etc), trying to keep myself as fit mentally and physically as I can under the circumstances (which sometimes means pushing myself a bit too far physically to do something I love accepting I may well pay the price a bit later on) and using natural and alternative therapies as much as I can afford as these seem to be the things that work best to reduce and control my symptoms.
I'm continually shocked by how little the medical profession seems to understand these autoimmune diseases and they do seem to be slightly different manifestations of the same thing with any one person having a unique combination of symptoms. This makes diagnosis difficult and a bit arbitrary in some ways as a person will often have symptoms from a different autoimmune disease or diseases as well.
It can be useful to have a diagnosis however as it can help doctors and other people take you more seriously and more inclined to monitor your situation. The advice above, to change your focus on getting your symptoms treated rather than a diagnosis, is good however, as my general experience has been that doctors are at their most useless when they feel they're at risk of looking stupid!
As far as the test results go, keep them for reference and gradually build up the evidence that you've got something. It's what I had to do as even when I had several miscarriages and a positive ANA indicating CREST the GP ignored it. By the time I paid privately to see a rheumatologist I had so much evidence he couldn't help but diagnose me!
Best of luck, it's a hard road but we become very strong as a result!
So sorry to hear about your issues. You are not alone here.
My guess is you are a reader, so it wouldn't hurt to browse the site and see if lupus symptoms are similar to you, there is another forum for fibro as welll.
Regarding blood tests, here is a link with helpful info and some
Please don't give up on looking for a diagnosis and right treatment. You deserve a better quality of life, and being the strong woman you are I'm sure you will soon find the answers you need. Hugs!
I am sorry that you are having such a rotten time. When I became ill some years ago I was beside myself because my doctors told me that my illness was all in my head. I was diagnosed with lupus a year later. I can tell you it was the longest year of my life. having all those symptoms and not knowing what was wrong.
Just because your bloods are coming up ok doesn't mean that they are. My recent experience and through research has led me to realise that sometimes the blood tests for autoimmune disease does not always coincide with what is going on with the person.
I am in a very bad flare at present, however my bloods are coming up normal. My Lupus is attacking my lungs right now. I had pneumonia in November, my raynauds was flaring and my blood test came back normal and they are still showing normal now. I am on three different immune suppressing drug currently to try to dampen my immune system.
I understand that having a diagnosis is a very important because when we understand where we are, we are in a better position to move forward, however that may not be possible for you right now because it may take a while for something to show up.
Try to find a doctor who understands that blood test are not always accurate, who is willing to work with you to help dampen down the symptoms you are experiencing until your bloods show what the problem is. perhaps when you get some relief from your symptoms you will have more strength to continue your quest to find out what is going on.
Hi Tiff I am so sorry to hear that you have been diagnosed with Fibromyalgia I suffer with this also was diagnosed in 2013 and it is hard especially as I have suffered with SLE Lupus since I was 4 but only was diagnosed in 1998. It is very hard and people do not understand because they do not have to go through the pain and fatigue daily for the rest of their lives but you will get through it trust me just have to stay strong eat well like fruits go for walks when you feel low, get a good Rheumatologist who listens to you and understands your every individual needs and can refer you to other Consultants if necessary and to get support from organisations like on here or the Fibromyalgia UK there is a organisation which tells you everything about this illness and there is also local groups in your area ask the hospital or at your Doctor's surgery and stay away from Negative people they will make your illness so much worse. Anyway take care of yourself and try and stay strong if possible good luck and take care.
I'm crying right now because of all the support you guys are pouring out to me. My boyfriend is great through all of this but there's only so much he can understand. He hates seeing me in pain as much as I hate being in it so its hard to talk to him sometimes. All the support I've received in the last two days has made me realize I'm not crazy, that there IS something wrong. I really can't thank you all enough for taking the time out of your day to reply to my post. This last month has been real rough and its lifted my spirt and heart to see all your kind words. Thank you all SO SO much. I really can't convey how grateful I really am.
Hi Hun, god I feel for you. I def agree that sometimes the blood results do not show the true picture. I am on a lupus support group in America, (I live in UK) and many of them talk about their results still not showing that they have Lupus but obviously do! Your GP should be helping you and supporting you much more. I personally decided with the agreement of the GP, to go private so I could see a rheumatologist. It cost a few hundred pounds but at least I jumped months of waiting for a diagnosis, and when you are private they actually take some notice. When I got a full diagnosis and had been put on hydroxychloroquine and steroids, I then went back into the NHS system and see rheumy regularly. It has still been a long, long struggle. Its just a thought but if your GP is not giving you the support and help that you obviously need, tell him/her. If no joy then change GPs. You are the important one not the doctors egos. Speak your mind to them. do not suffer in silence sweetheart. Good luck. I am currently about to go to a functional medical practitioner in London to do extra tests to see what is going on in my system, and to discuss going onto the Auto immune Paleo diet which helps all sorts of autoimmune conditions., and which supplements my body really needs. it is all a long road but you will get there. We are all fighting alongside you. Lots of love xxxxxxxxx
I just want to let u know u r not alone.I have very similar symptoms with a similar diagnosis.I think there is more than fibro and depression going on .having itchy skin is a nightmare and migraines can drive u insane.I'm not sure what I can tell u that will help but just no u r not the only person struggling with symptoms doctors and life in general hang in there.x
Hi, Fibro can be part of a bigger connective tissue picture as already said and it is sometimes difficult to pin down which one as they symptoms are similar and change. Bloods are not always reliable. You have given your past history and theres is drug induced Lupus as you have said, although these drugs are specific. It can take a rather long time to get a balance right especially when you in continual flares. Ask your GP for autoimmune management like occupational nurses, they may be able to help you with pacing and pain management and may have more time to listen to you. Please don't give up.
You just explained my life. I do have my diagnosis now, but it took years. Lupus W/ several other autoimmunes linked. I know first hand what you are going through. I went from being an active fitness freak to a barely functioning aching stranger. My insurance is horrible and no one accepts it. I ended up contacting the hospital directly and was able to qualify for a discounted rate. I know it's tough but DO NOT give up. I found a Dr. Who listened and told me I wasn't crazy. I live in Maine and cant wear a jacket. I sweat when it is 30 out. Look up eurthamyalga. I also had the red itchy pimple like rash. I still have scars. It is basically a chronic condition and I have a steriod creme for any flare ups. Even with all my medications I still can barely use my hands. They are always swollen, and hurt a lot. My pain is still there everyday but not like it was. I am still depressed, but I think it is more chronic fatigue and my change of lifestyle. Just know you are not alone and unfortunately it is going to take some work on your part but you can get a diagnosis. BTW my blood work was normal for years, so they put me on thyroid meds. Eventually my inflammation took over and my blood test was confirmed. Message me if you ever have questions!
I can't take pills because they tear up my tummy. I've been gluten free for the last four years. They're doing a pelvic and vaginal ultrasound on me because the only thing wrong with my urine is that my protein level is at 100 and there are NO signs of infection this time around. The only vitamin deficiency I tested for was D and they can't give me another script for it until they give mea referral approved by my insurance for a specialist to perscribe me that. I don't get sores, they're itches red little monsters that now have spread to my jawline, cheeks, and bridge of my nose. I KNOW they're not acne because all my other acne of my forehead has gone away with my topical treatment. My tops of my hands are dry and cracked but literally NO lotion or ointment makes it stop and now its spreading up my fingers. This doesn't seem like a thyroid issue to me or my doctors. No one knows what the Hell is wrong. ):
I hear you! I am 63 and have just been diagnosed after a lifetime of not knowing what was wrong with me.
I will give you the best advice I was ever given. At age 45, a doctor told me....
"If you do not de-stress your life, you will not survive this."
That means make a list of the things that make your life harder and work at letting go of them. Releasing most things will be easy, but some will be very hard - I had to let my aggressive teenager go to live with his father.
Remember, you and your health are the only things that count right now. By resting and allowing others to help you, you WILL regain control of your life.
TKRoll. The same kind of labs came back for me until I went to a lupus rheumatologist specialist (he had lupus himself. ) He sent labs to a specialty lab in California and it came out midrange systemic lupus 😳😳. You certainly don't have "nothing" and need to be treated. I'm sure doctors look at your age and either ignore you or think you're a drug addict looking for pain meds. Make sure you are HEARD!!!
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