Scared and lonely

[Natz36]

Hi everyone

So for the past few days , balance and feeling like not so much as a drunk feeling but the use of my legs like lead and can’t cope walking as feel like I’ll fall awe it’s so difficult to explain 😢

Woke up this morning and literally felt like weak and was feeding the cat and stood up and just got that feeling again .

Yesterday I had a headache but today it’s gone but the balance and my head feeling heavier than my neck is still here .

My mouth was dry this morning again Lomé yesterday.

Usually around the afternoon I don’t feel as bad ?

Apparently I have to wait up to 30weeks to see rheumatologist.

My doc was off sick today as I wanted to try and see her because of how uneasy I was 😢

I’m drinking and eating don’t feel poorly it’s just the constant feeling my headache heavy and my legs just don’t seem right .

I’m scared and frustrated. Had an MRI back in November and all was clear so trying to tell myself it’s not a tumour and maybe I’m just suffering neurological symptoms but they get worse also I was reading about histamine intolerance in food really interesting and may talk to my doc about this also

Has anyone heard of this ? Any one know why I’m getting like this ? Trying every day to act normal when all I want to do is stay in bed and not walk anymore x

[Hidden]

Ah Natz,I’m so sorry. I know what you mean about the heavy head and dizziness. On days like that, I don’t even want to sit up. I just lay curled up on the couch. Not away to go through life, and luckily, this will not be the way you’ll spend your days forever. But if you need to for now, let yourself. Otherwise, yes, push those doctors to get you in for an appt. You’re too young and have too much you need to be doing to wait that long for an appt. 🙏all my best to you, and please let us know how you are doing.

[Natz36 in reply to Hidden]

Thanks so much for your reply .

I’m terrified I have a brain tumour 😢 it’s torture.

I’ve had this for two and a half years now and had too give up running x

I’ve been to ENT as I have tinnitus I passed it all they were the ones that booked the MRI appointment and it’s clear but even having a clear result I still feel like it’s something else even though I should be happy it was clear x

I hate it so much dread waking up most days incase it’s bad like it has been x

[Hidden in reply to Natz36]

I hear you. How long have you been going through this?

[Natz36 in reply to Hidden]

I had Cushing’s syndrome 2004 , had adrenal gland removed , have kyphosis.

Lost both my parents 2014/2015 .

Started noticing things about 2017 then got a rash before Christmas 2019 with swelling of the feet and painful left toes have bad raynauds and also the balance feeling x

Honestly have no answers at all and am fed up x

[Hidden in reply to Natz36]

Oh wow, I think that’s it!!! The stress you’ve gone through, and I am so sorry for all you have gone through, but that could set off/trigger these problems. I know for me, both good stress as well as bad makes me very ill and a long recovery. And you have had some of the worst type of stress and sadness. I am soooo sorry. Please, be good to yourself. You need to allow yourself to heal, and be patient and kind to yourself. Elevate whatever stresses you can.

[Natz36 in reply to Hidden]

Thanks lovely.

I’m due on and was told that things can be worse around this time so I’m praying that’s what it is and my balance issues will be a bit more manageable once I’m on .

Have suffered a lot since my periods came back they stopped when my dad was dying I also was over exercising and not eating much but definitely recovered from that especially now I’m unable to do much exercise. X

[Lupiknits]

I really can’t help, but am sending a cyber hug anyway x

[Natz36 in reply to Lupiknits]

Thanks so much x

[Hidden in reply to Natz36]

Me too 🤗

[Natz36 in reply to Hidden]

😊

[MEGS53 in reply to Natz36]

hugs from me too. xxx

[Natz36 in reply to MEGS53]

So kind seriously means so much and once I get a diagnosis of whatever is happening to me I’m going to keep you all updated x

Feel okay today 😊

[MEGS53 in reply to Natz36]

Yes, please keep us updated but please be aware that this is likely to be a long journey. luv and hugs to you and Beauty.

[Hidden]

I meant, alleviate, not elevate!! Ugh, the exact opposite!! Sorry.

Please take care of yourself. Love yourself, and baby yourself. You need it.

[Natz36 in reply to Hidden]

I’m trying but I’m blaming myself because I’ve no diagnosis of anything and always been told it’s anxiety and it’s nothing 😢sorry but I know myself that I’ve not felt normal for years x

Thank you . X

[Hidden in reply to Natz36]

If this doctor isn’t listening, find another.

I’ve been going through this for 5-6 years (actually longer but I thought they were all unrelated issues and treated them that way). I’ve seen 9(?) doctors/health care professionals. Some of them great who helped fill in pieces of this puzzle, and some with their own agenda and not so great, who I’ve replaced as soon as I realized they weren’t going to help. You may need to consider new care professionals. There are great ones out there.

[Natz36 in reply to Hidden]

I’m currently seeing a new doctor at the practice I’m with now she’s so lovely and kind understanding. As soon as I was back from the hospital the next day she booked me an app to see her and booked the blood tests which came back fine although she did say that could happen then she made the appointment for rheumatologist but because it’s NHS I have to wait which is understandable x

[stiff19 in reply to Natz36]

Bless you I also have no diagnosis but that doesn’t lessen the symptoms. Best thing is though it’s hard try and stay positive, the more stress the harder the symptoms to deal with. Best wishes 🙏

[Natz36 in reply to stiff19]

Yes you’re right it’s because I don’t know that’s making things worse it’s like my friend has fyiabligoma sorry can’t even spell that and like she says at least she has something to blame her symptoms on x

It’s so difficult x hugs to you x

[Roarah in reply to Natz36]

I am so sorry you are suffering. Can you ask your gp to set you up for treatment to your anxiety? Anxiety is not nothing it is a serious illness that can ruin the quality of your life. It is also a very treatable illness.

Of all my diagnosis, I have a history of lupus, APS with CVA, fibromuscular displasia and generalized anxiety disorder, the anxiety had the most diabiliting effect of all. After a year of treatment I finally have my life back. My health is better to boot.

While waiting for your rhemie appt you can at least start to search for help treating your anxiety. Losing both parents is a terrible trama and it could have set off a ptsd effect. Untreated ptsd is often a precursor to autoimmune disease. Please address your anxiety with your gp there are many great treatment options to help.

[Natz36 in reply to Roarah]

Hi I have had lots of therapy but nothing has worked as I need help with what’s happening to me that’s what is making my life difficult not the anxiety.

Trying to deal with the symptoms are a lot worse than the anxiety it’s self .

Once I know what’s wrong with me I can try and get in with my life x

[stiff19 in reply to Natz36]

Understand totally 👍🙏

[Roarah in reply to Natz36]

Do you have a history of migraine? There is a condition,MAV, that presents with symptoms similar to what you describe. Also, menieres should be considered if you have any hearing loss with the tinnitus and vertigo. Did the ENT do a hearing test and balance tests on you?

MAV can be treated with preventive meds and diets and menieres can be lessened by diuretics and a low salt diet.

[Bigguy_1969 in reply to Roarah]

What things have you done for the anxiety???

[Jhpc in reply to Bigguy_1969]

Sending you hugs Natz 🤗🤗 hope you start to feel better soon. Xx

[Natz36 in reply to Jhpc]

Thanks so so much x

[Roarah in reply to Bigguy_1969]

Sorry for the late response, on a ski holiday in Canada ;).

I started last year with MBCT a form of CBT that uses mindfulness practices. I love it and it changed my whole world . I am no longer worried about tomorrow I live just in this moment. I spent most of my life ruining today with worries of tomorrow. No longer though. I am happy and alive now!

I meditate at least 15 minutes a day. Also as part of my therapy I was encouraged to walk at least thirty minutes each day as well.

I love KK meditation, Sa, Ta, Na, Ma. It has been proven to improve cognition, strengthen the grey and white matter areas of the brain, and shrink the amygdala( an enlarged Amygdala is seen in anxiety patients and reducing it is pertinent for lessening symptoms of anxiety.)

I also have ACt therapy a EMDR treatment for post stroke pain and post stroke PTSD. The EMDR is new for me but after a few weeks I like it so far. It is an eye movement desentization and reprocessing technique to minimize trauma's effect on the body.

I have not tried meds at this junction but if my anxiety returns to the level I experienced before my therapy I will try medication. So far I have been very Sucessfully treated sans pharma.

[Willow1414]

Hi Natz36

I really understand how you feel .

I think your still grieving for the loss of your parents , and your health issues doesn’t help .

Do you like knitting ? It’s very relaxing .

Buy yourself some flowers . Try to treat yourself more . Write down how you feel and issues your having with your health . Questions you need answers to .

It will help when you get your appointment .

🌹

[Natz36 in reply to Willow1414]

Thanks lovely 🥰❤️

[svfarmer]

So sorry that your going through this at the moment, can’t offer any advice but sending love and hugs 🤗 hows things with your new cat? Xx

[Natz36 in reply to svfarmer]

Hi lovely

Aww she’s doing fantastic although she always wants to eat so I’ve just been feeding her three times a day but we are at the vets with her Monday and I know they will be better at advising us regarding her eating 🥰❤️

And thanks just feel lost feels like I’m doing something wrong in life ☹️ X

[stiff19]

Hi Natz, bless I feel for you the waiting is horrible. I can relate to what you say I go dizzy a lot if I bend and stand upright and can relate to heavy legs too sometimes it feels like the don’t belong to you? Also head feeling too heavy to hold .i feel zonked usually in the afternoon , fighting fatigue

Yes the battle is draining, wanting to do so much but just such an effort to push yourself through it, some days impossible.

Have you tried phoning incase of cancellation. ? Hang in there it’s frustrating as hell but try not to worry it may make you worse, I know that’s easier said than done.

Really hope you get some help , all my best wishes 🙏🤗

[Buckley123]

My neck is always heavy ! I know it can be a neuro issue as I have some ! I have a few brain lesions but it’s not particularly dangerous it can happen with lupus aps sarcoidosis sjogrens ect ! You should really have a scan but I wouldn’t worry about a brain tumour easy said then done ✅ I’ve panicked over everything ! I had a diagnosis last week of neuro sarcoidosis

And it taken away back to uctd again the week after !! Basically no one knows !!! I’m in the middle hanging in the balance just chilling here on steroids !! Could have lupus one day or aps sarcoidosis ect ect ect but for now my neuro is convinced it’s uctd and il have to wait and see

But push for a scan but don’t worry xxx