What is wrong with my body
Posted , 6 users are following.
Hello
I have never posted on something like this before but i really feel like i need to be heard.
I am a 26 year old woman and i am really worried about my health. It all started 2 years ago, July 14th. I went to bed the previous evening a normal person, then woke up in the morning with weak legs. i put this down to maybe coming down with the flu, however i didnt show any signs of illness and the weakness continued. I went to the drs after about a month and said look, ive got this strange weakness. They did standard blood tests and said my iron was low. This has always been a thing and it runs in my family, i have had tablets for it in the past etc. It felt like a different type of weakness to low iron weakness. Anyway moving on months down the line, i still have this weakness, been to the drs numerous times coming away with no answers. Bringing it foward to the present day i still have the wide spread weakness i can even feel my facial muscles weak on bad days. i have brain fog, memory loss, 0 ability to concentrate, tingly feet, itchy skin, sore sunburned feeling skin at times, burning pains, muscle twitching, i feel so tired sometimes during the day that i cant string a sentence together. If i sit in a position too long my muscles are agonisingly stiff and its painful to move, i cant put makeup on sometimes without my arms being so exhausted, shortness of breath, rapid heart beat when standing up etc, lightheadedness, dizziness, i have giant swollen lymph nodes in my groin. if i do the garden or housework it feels like ive ran a marathon the next day my muscles are so sore. i ended up being off on the sick for 6 weeks at work due to this, I was back at the drs again and they did more tests, no vitamin deficiency anymore yet i still feel this way. I got told last time theres nothing to be done and its my mental health causing these feelings. i STRONGLY know this isnt the case as i know my body. my muscles are so weak and it never goes away what is wrong? obviously it isnt normal. They blame it on mental health and me being underweight. i am so scared and i feel so alone with this that i cry myself to sleep. i feel like im not heard and nobody understands what im going through 😦 i miss how i used to feel. im worried something serious is wrong but they wont listen to me because my blood tests are coming back normal. my health anxiety is so bad thats its effecting my life, im worried sick every minute over it, trying to manage a normal life, working & raising my daughter pretending im physically well is mentally destroying. i really dont know where else to turn because when i let it consume my thoughts it makes me feel suicidal.
0 likes, 5 replies
anna76498 georgie97
Edited
Hi Georgie,
I've come here looking for answers too - in a similar position to you. Feel fobbed off by the drs after various tests showed 'nothing is wrong'. Sorry you're having the same. I've made an appointment with a more experienced doctor - have to wait a month for it but felt it was the only way to get answers. Don't know if this is an option for you?
Take care of yourself.
Anna
georgie97 anna76498
Edited
hi anna, thankyou for your reply. i haven't been on here in a while so i have just seen your message. i get fobbed off by them constantly, all they do is give me blood tests and its back to square one. the drs im at isnt very good ive been thinking of changing. are you experiencing weak muscles?
i feel broken because of this health issue
hope you are doing okay
georgie
patricia17719 georgie97
Edited
Hi Georgie
Quite clearly you have Chronic Fatigue Syndrome, you have all the signs. Mine started with weak legs too funnily enough. It's taken me 11 years to finally get diagnosed by a rheumatologist. The dizziness on standing could be orthostatic intolerance (another symptom of CFS) I too have a feeling of sunburned skin (another symptom of CFS) Brain fog, breathlessness, rapid heartbeat on standing, dizziness, all the things are CFS symptoms. Don't be fobbed off by your GP ask for a referral to a rheumatologist.
Don't give up, I wish you well x
charcey97 georgie97
Posted
My beat advice is...take deep breaths and only focus on whats in front of you at the given moment. I know this sounds like trivial advice, but I'm dealing with the same stuff and I'm learning to take it in bite sized pieces. My only other advice would be to start looking for a physician in the alternative health field. When tests are normal and you’ve exhausted all the testing possible for neurological issues, etc., you have essentially played out what Western medicine can do for you. Seek out help in the Eastern Medicine realm. You'll find more answers there. I have. Started this journey four years ago with my first run-in with chronic fatigue. Went into remission one year later...thanks to Eastern Medicine. Haven’t had any issues since...until now. of course, it’s freaking me out because I still don’t know if that’s what it is or if it’s something else. Getting checked out by Western Med first, you can bet I’ll be back with Eastern medicine if that’s what it is. Actually, I’ll be back with them either way. So...taking it by small bits. Good luck to you!.
may37955 georgie97
Posted
Hi Georgie,
I'm so sorry you are going through this. You definitely need to push for answers as I found at my surgery when blood tests are done there's regardless if there is something wrong and you have to chase results and it seems to fall on you to make new appointments. Make sure you demand answers and ask what the next step is and they cant ignore you.
I was similar to you with 'acute onset'. I went to bed fine July 2019 and woke up with Chronic fatigue and weak legs. For 2 weeks I could barely function and had to crawl upstairs. It's difficult to explain how my legs felt but the way I'd describe it is that they felt like they didn't belong to me. They just didn't seem to want to work. I also got lots of muscle twitching in my legs and even my mouth was too weak to be able to talk at times. I couldn't understand what was happening, it was very alarming so I Googled symptoms. Immediately CFS came up. I made an appointment and reeled off the symptoms and didn't mention the CFS as i wanted to see if doc would come up with same. She said "Have you heard of CFS?" I was so glad we were on the same page and I think tbh I was lucky with the doctor I got on that particular day. She said that I could not be referred to a CFS specialist until everything else had been ruled out so I had many blood tests to check iron levels, liver, kidney, blood sugar, Thyroid...... the list goes on! Once we had exhausted everything there she sent me to a Rheumatology specialist to rule out problems including lupus as i had a blood test that flagged antibodies which had something to do with my muscles. That was a dead end and I then finally got referred to a CFS specialist which was all done via video due to continuing covid restrictions. I must say that there was a delay in diagnosis where i didn't do anything for a while. The weird leg symptoms were gone but the fatigue dipped in and out but because I hadn't understood fully what was happening I just thought oh i'm a bit tired so when i went back to doc if i remember rightly we had to start the process again when my symptoms came back with a vengeance in July 2020 during lockdown. It then occurred to me that both times I had experienced acute onset the weather had been hot which i learned is a trigger and during lockdown i had started doing cardio workouts and exercise is also a trigger. Looking at the calendars between 2019 and July 2021 when I finally had my first appointment with a CFS specialist, I must have had around 30 blood tests and 15 docs appointments. My symptoms levelled off by the time I had the first specialist appointment and I was diagnosed with mild CFS. It didn't feel 'mild' to me but compared to people who have to get put on medication and cant get out of bed I consider myself very lucky. I was put on a programme to help me manage symptoms which looks at your activity levels and learning where your baseline is so you learn not to do more than your body can handle to avoid relapse.
Write down your symptoms on a daily basis if you are able to and be specific like what time of day the symptoms started, how long it lasted and if any particular activities made it worse etc. Because of the terrible brain fog there were certain things I couldn't answer accurately and couldnt remember. Caffeine, alcohol, sugar can worsen symptoms apparently. I cant say either way I guess its different for everyone but I'm totally addicted to sugar and haven't given that up but have little alcohol and only one caffeinated tea in morning. Meditation is good if you can find time but like you I have kids so it's difficult. It is a constant battle and you are still expected to carry on a normal and raise family etc. People can be very dismissive of it i suppose because its an illness that can't be seen and I'm still struggling tbh and find myself having to constantly remind people about my condition. I was put on medication because I developed really bad anxiety. I was always very active before my diagnosis and could do several chores and exercise in a day and coming to terms with a very reduced level of activity has been very difficult and i still haven't fully come to terms with it.
I feel like I'm writing a novel here so won't bombard you with more info but hopefully the things I mentioned will help a little. I really hope you are listened to and you finally get a diagnosis. If you want to and are able to I'm happy for you to PM me.