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DalzellGirl's Post

DalzellGirl

1y ago

Seeking Help for Unexplained Pain and Symptoms

Looking for someone who is experiencing muscle pain in shoulders, neck, arm, hand, legs, and feet. Also joint pain in fingers, wrists, hips, ankle, and toes. I have evening and night sweats with chills every night along with blurred vision. I have heat sensitivity just by cooking at the stove. Certain sounds now drive me crazy like running water from the sink, people smacking while eating, whistling, etc., it hurts my ears. I have brain fog and can’t spit out the right words sometimes and will get confused while speaking. Sometimes I just start running a low grade fever for a couple of hours every once in a while and get a mild sore throat and swollen glands. Although this is an everyday pain, once a month all of this pain gets even more severe with a dry cough. It attacks me so bad, all I can do is curl up in a ball for 2 days then I’m left with all over weakness, especially in my legs. This has been going on for a couple of years and is getting worse. I also went from 145lbs down to 105lbs and now weigh 112lbs. Doctors thought I had Lupus, then Lyme, then MS. All test come back negative. My old doctor finally gave up and said it’s fibromyalgia. I don’t think this is it. I think it’s either lupus or could be Lyme or maybe some other autoimmune disease. I do know that in October my new doctor did another ANA test Here are the results ANA SCREEN, IFA POSITIVE A NEGATIVE ANA IFA is a first line screen for detecting the presence of up to approximately 150 autoantibodies in various autoimmune diseases. A positive ANA IF result is suggestive of autoimmune disease and reflexes to titer and pattern. ANA PATTERN Nuclear, Homogeneous (A) abnormal A Homogeneous pattern is associated with systemic lupus erythematosus (SLE), drug-induced lupus and juvenile idiopathic arthritis. AC-1: Homogeneous International Consensus on ANA Patterns (https://doi.org/10.1515/cc1m-2018-0052) F ANA TITER 1:40 (titer) H (High) A low level ANA titer may be present in pre-clinical autoimmune diseases and normal individuals. Reference Range <1:40 Negative 1:40-1:80 Low Antibody Level >1:80 Elevated Antibody Level Just took another ANA test a week ago and now everything is negative. The doctors just don’t want to take the time to listen to me, they only get half of my symptoms down and seems to not bother, because they are so busy to get to the next patient. I’m at the end of my rope and don’t know what to do or where to go. I’m so fatigued and exhausted!!!! Please if someone has any ideas or suggestions I will gladly welcome them. Thank You

Your answer

Marb

9mo ago

There's this NSAID gel dicoflocan has helped me soooo so much. You can get a tube for like $9. I don't need pain meds anymore thanks to that! As always though, talk with your doctor and examine the contents for any potential risks.

Greensy

9mo ago

A functional medicine doc will look into the root cause of your other symptoms, and then address that rather than suppressing the symptoms. “Drjessmd” on tiktok is very informative. She also has a website and an Instagram account where she shares more longform blog posts about topics.

bunnybrain

1y ago

Reading this feels really familiar to my experience. I was officially diagnosed with a "biomechanical joint disorder" but have had the labels fibromyalgia, ME/CFS used. All my symptoms align with Elhers Danlos Syndrome. Or EDS, especially when you mention the joint pain in addition to the muscular pain.

Igglepiggle

1y ago

Request double stranded dna test if it’s positive then you know it’s lupus

DalzellGirl

1y ago

Yes, I’m definitely not gonna forget about that either. My new doctors nurse did call me this morning. Negative for Lyme, but she said something about one of the other test that she did on me showed something that could indicate mixed connective tissue disease. She’s waiting on my previous slack doctors office to send my medical history and all previous blood test. She requested them Last Thursday and obviously they are playing around on sending them to her.

DalzellGirl

1y ago

Just a quick update to everyone that has responded to me. I finally saw a new female doctor Thursday!!! She made a copy of my notebook page of all my symptoms that I’ve written down and she said she was going to dive in and look at everything. In the meantime she is first referring me to a neurologist, because some of my symptoms are consistent with MS. Next, she said if the neurologist doesn’t find anything then she is sending me to a Rheumatologist. Before I left her office she drew blood to do testing for rheumatoid arthritis, Long term Lyme disease and another ANA test for Lupus!!! I was so happy I started crying and said thank you, thank you so much for listening to me. She has done more for me in a 30 minute visit than the other 2 male doctors have done since 2019. Will be sure to keep everyone updated on my status as I continue on this journey.

Ash.G

1y ago

I don't have too much advice on how to get doctors to listen but if you're a female female doctors might be more likely to help you out because they understand how a female body works better than most men do. I experienced most of the symptoms your saying at least for the joint pain bit.

DalzellGirl

1y ago

Wow, bless your heart!!! You sound like me, I’ve had a heart attack back in 2016 with stent, doctor said my heart was backwards!! 🤷🏻‍♀️ I now have diabetes, had to have a hysterectomy in 2017, just had half my thyroid taken out on Dec. 9th., because of nodules. I’m a walking anomaly!!! Oh and they didn’t even tell me about my kidneys!!! I looked in my chart and it said Stage 2!!! Actually they never said anything about the ANA test coming back positive the last time. I had to look in my chart online to find that out too!!! 🤦🏻‍♀️ I also have depression and anxiety, the nurse asked me yesterday if when I start hurting so bad, do I wanna hurt myself? I was like yes, that thought has crossed my mind especially when you’ve been dealing with this day in day out. The doctor never said a word to me about it. Yes, everything sucks and I’m so sorry you had to go through all of this, I do hope you get better and find your answers. Yeah I’ve tried calling Rheumatologist and get no answer and they never call back. My friend that lives way out in the country, about an hour away told me about her doctor and that she was very nice and listens. She also said it was never busy, I guess because it’s out in the middle of nowhere. Anyways I’m gonna try to call her today and see if I have any luck. I don’t mind driving an hour away if I’m gonna get some help and someone who listens to me. 🥰

Igglepiggle

1y ago

afraid as you age things like autoimmunity get missed as it can be normal for people in their 50s to have a mildly positive Ana or early kidney disease but it can also not be normal and so shouldn’t be ignored, and yes it’s awful how they don’t actually care for mental health my mum told them how I had been self harming for years and was very close to attempting suicide and they did nothing, we have to pay for therapy privately! And going through school I was struggling with all this plus adhd autism and dyscalculia I had 2 nervous breakdowns and suddenly couldn’t keep up with my grades and the school refused to help me which is illegal by the way!! I was forced to drop out, the world is so broken. To be honest the government would rather we died, less sick people in their way so getting help is made to be as challenging as possible, hope you can find someone to help you.

Igglepiggle

1y ago

You can request a test for double stranded dna and Lyme to try and rule those out, if you test negative for ds dna that doesn’t mean it’s not lupus but if you test positive then it is lupus so that’s a good test to do, I’m afraid the waiting list for seeing a rheumatologist at the moment is over a year long… and they don’t even do much anyway they look at your medical records and just agree with whatever the doctor said based on that really :/ and then depending on if they think they know what it is or not they’ll prescribe u a baseline medication straight away, mine was obviously lupus so got put on hydroxychloroquine that same day but I have hashimotos too and other problems I need answers to so gonna ask at my apt this week, it’s a tough time for people with autoimmune diseases as the waiting list is sooo backlogged the only people getting seen fast are those in stage 4 kidney disease or heart issues etc the real emergency cases, I was expedited and seen quickly when they realised by diagnosis was gonna be easy with the ds dna and they were worried about my heart being admitted to a&e 3 times from severe chest pain plus being 19 and having a very long list of symptoms that stopped me from finishing school and left me mostly bed ridden with no friends etc I also have adhd and autism and anxiety and a history of depression so they were very worried about my mental health but generally I was just lucky they took me seriously, and even then I’ve been waiting 3 years since I first asked the doctor about my issues. It’s not a nice process if you can pay for anything privately that’s always good tho it sucks and get into therapy now preferably a medical specialist therapist for people dealing with medical conditions

DalzellGirl

1y ago

I really and truly appreciate everyone’s feedback. I’ve gotten better responses and info from all of y’all than I get from my 10 minute doctor. As soon as I find another doctor and get some more testing done I will definitely give an update 🥰

Seae

1y ago

I’m voting Lyme, that list of symptoms could have been written by me. Can you see a NMD (Naturopathic Medical Doctor)? Mine was amazing (Proefrock in Surprise, Arizona).

DalzellGirl

1y ago

Thanks so much for responding!!! Wow, that’s unreal with the symptoms!!! Yes, I have thought about Lyme, because I’ve lived in SC all my life and as a child and adult, I’ve picked a lot of attached ticks off of me. I watched a documentary the other day called Under our skin, it’s on YouTube and Pluto. I was blown away of all the people that were diagnosed with fibromyalgia, ms, lupus, and many other diseases to finally find out that it was Lyme. I just don’t think I have fibromyalgia, especially with the weight loss. I’ve been leaning more towards Lyme or Lupus and I may be wrong and it could be something totally different. It would really help if I could just ever get a doctor to listen.😡 I’m trying to find one of those doctors, because I heard they were great, but its hard in SC. We are one of the most backwards state!!!

Igglepiggle

1y ago

all these illnesses people are suggesting completely overlap there’s no way of guessing without hard evidence like positive blood tests

Drewsdad08

1y ago

Did they check your thyroid function? Sounds like what I went through before finding out hypothyroid (under active)

DalzellGirl

1y ago

Yes, I had some nodule’s on my thyroid and they removed half of it back on Dec. 9th. They thought I would gain weight and have to put me on thyroid medication, but even with half of my thyroid my level are normal with no weight gain. 🤷🏻‍♀️

DimDim

1y ago

Have you checked for cystic fibrosis?

DalzellGirl

1y ago

Thanks for responding, no they have never tested me for it and never mentioned it. I can’t even get enough time with the doctor to tell him all my symptoms. All they care about is money and if regular blood test come back ok. I’m definitely gonna be calling and finding another doctor.

DimDim

1y ago

Also some PTSD symptoms in there which usually are conjoined.. have you been through a/a number of traumatic event(s) in the past?

Igglepiggle

1y ago

Sometimes you test negative when it’s in remission however short that may be compared to in a flare, I have lupus and a lot of ur symptoms plus more, they should also test for rheumatoid arthritis and have they tested your ds dna as ds dna means lupus

DalzellGirl

1y ago

Thanks for your response and information!!! No, I’ve never even heard of ds dna? I was hurting so bad today I even went to the hospital emergency room and was basically booted out. I handed the doctor a list of all my symptoms and told him I thought I had something more than fibromyalgia. He just rolled his eyes and said I can’t go through this list and then told me he could not help me and that’s not what the emergency room was for. He said he was sending a referral to pain management. I started crying and said, I would rather have a referral to a rheumatologist. Nope, you can go to pain management and then walked out. 😥😡

sorenachy

1y ago

I'm so sorry you are having such a hard time getting them to listen to you!!

DalzellGirl

1y ago

Thank you so much, I really appreciate that!!!

SleepyLizard

1y ago

If it helps I have almost all of these symptoms and I have ME/CFS. Apart from the fatigue, you also get brain fog, noise sensitivity, night sweats, chills, inability to regulate your temperature (over heating or getting too cold really easily), widespread muscle aches and pains, flu like symptoms (cough, chest pain, swollen glands, sore throat) If these symptoms started after an infection that you got it might also be Post Viral Fatigue Syndrome. Hopefully this helps, if you can switch doctors at all, it's worth it to find the right one who'll take you seriously. But with stubborn doctors it might help to literally give them everything they could possibly need (written list of symptoms, written list of medications and previous medications with dates, test results)

DalzellGirl

1y ago

Thank you so much for responding. I’ve actually gotten more info on this from everyone than what I’ve ever gotten from my doctor. None of my medicine works. They have me on ibuprofen, gabapentin, tramadol, for the fibromyalgia and none of it helps. They also had me on an antidepressant cymbalta. I played the devil getting off the cymbalta, because it did nothing for me. I looked up ME/CFS, wow, I have just about all of those symptoms too. Thank you for providing that to me, because I’ve never heard of it before. I know I’ll go to work and by the time I get off I’m hurting so bad I can’t stand it. I’ve never been sensitive to sounds before, but I sure am now. If I’m watching tv and hear noise in the background it irritates so bad. Running water, someone eating, a car going by with music. I have tinnitus in my left ear and I have to sleep on the couch with the tv on to drown out the static noise in my ear. I freeze one second and hit the next. I’m just leery about the fibromyalgia, because this has been going on for years and nothing helps. My friend that was a medic in the Air Force said that many doctors will use fibromyalgia as a diagnosis, if they can’t figure it out by blood tests. I believe that to be true because my last doctor would never spend more than 10 minutes at a time with me and say well your bloodwork looks okay so we are gonna just go by that. 😡

S0phoe

1y ago

Just reading through this post without finding out you were unsure of what this was the whole time I was thinking "fibromyalgia" I have it and the symptoms are so consistent with mine. All the pain especially in the joints, the sensory issues, brain fog, sweats, bad temperature regulation etc. How you describe the once a month getting sick and being in horrible pain and feeling weak is exactly how my flare ups present. The weight loss is the only thing that throws me off. Fibro is typically only thought of as pain but it impacts so many emotional and mental factors. Wish you luck with figuring this out💕

DalzellGirl

1y ago

Thank you so much for your response, yes the weight thing threw me off too. They thought that it was my thyroid, but half of it has now been removed and they thought that I would have to go on thyroid medication and gain weight, but nope. Thyroid level is good and still have not gained any weight. Weird thing I forgot to mention, as bad as my pain is all the time, when they put me to sleep to remove half my thyroid on Dec. 9th., I came home and for 3 weeks all my pain that I have everyday, that I’ve had for years completely disappeared. I had forgotten how it felt to feel normal, because I’ve not gone a single day in years without pain. I was crying, because I could actually get up do stuff and felt like baking cakes and cookies. How do you get put to sleep and the excruciating pain that you go through everyday just disappear like it never was. 🤷🏻‍♀️ After 3 weeks it came back on me like a ton of bricks though and has been that way since.

anemone

1y ago

ana positivity alone isn't a sign of autoimmune disease, it's a sign of inflammation in the body. homogeneous pattern is the most commonly mistaken read of dfs, which is considered healthy positive, and 1:40 is a pretty low titer for lupus. and also, in my experience, with my fluctuating ana results, homogenous and speckled go back and forth. some research into fibromyalgia even considers it to be an autoimmune disease in and of itself. my doctor thought i had lupus at first too. have you ever had covid? if so, when? there's a form of postviral illness that mimics lupus. pcs is part of an umbrella that includes me/cfs, migraine, and fibromyalgia. given that fibro can be brought on by illness, and every one of the symptoms you listed - muscle and joint pain, night sweats, vision problems, heat sensitivity, other sensory issues, brain fog, fever, swollen glands and even the sore throat and cough - are all common symptoms of fibromyalgia, it seems like that may be a reasonable diagnosis. if you can find a doctor that specialises in fibromyalgia, not just a rheumatologist, you might find better luck getting treated there. best of luck.

DalzellGirl

1y ago

Thank you so much for responding. Yes I’ve had covid twice, but I had all this before covid, it’s just getting worse. I also forgot to mention that I’ve had Mononucleosis twice. Once when I was little, 1977 and once in 2019. Sorry about that, I have so much going on with me I forget things. I’m trying to find a doctor at this time, I’ve never even seen a rheumatologist. They tried to send me to pain management, but I can’t even get in until August 7th. None of my medication works for me at all. I’ve gotten more responses and answers from y’all than my doctor and I truly appreciate that.

Neverlandgirl

1y ago

I suggest that if you are a female look for female doctors if at all possible. I am a female who had a male doctor for many years and I was constantly dismissed and it didn't feel like he was fully listening to me, once I saw female doctor she fully listened to me and ask family history questions and was pretty much able to figure out what I had after one visit. For further context I have juvenile psoriatic arthritis so that could by why it only took one appointment and i inclued it to share what my experience was. But hopefully you can find the right doctor who actually listens to you❤

DalzellGirl

1y ago

Thank you so much for enlightening me on that. I didn’t even think of that, but you’re right, I probably need to find a female doctor, because mine which is male, dismisses me from the get go. I get the, well your blood work looks ok, so we are just gonna go with that. 😡 Then leaves the room so I can come back and spend money and another 10 minutes to hear the same thing over again in 3 months!!! I’m so aggravated and angry, because I know I’m not getting anywhere. This has been going on since the beginning of 2019 and I’m exhausted and broke.

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