GP thinks I’m crazy!

[BexAubs20]

Ok so I’ve been having symptoms for years now and been tested for all kinds of things via bloods, stool and urine samples. The only thing that came back positive was low vitD which I’ve been taking daily for months and still don’t feel any better. I’ve got a tugging type sensation in my lower tummy either side of my hips as well as the following symptoms; Headache
Nausea
Severe back/ hip pain
Rash on face & under breast & chest & arm, back of knees on hips and eyes
Bowl issues
Dry sore bloodshot eyes with rash on eyelids
Phlegm
Depression
Anxiety
Fast/ irregular heartbeat
heavy, irregular periods 2 x per month
Pain under right side ribs
Heavy legs
Mouth ulcers
Bruise easily
Dry nose with scabs
Dry sore lips
Random body twitches
Toenails peeling off
Brittle fingernails
Dry hair
Twitch under right eye
Acotites- swollen tummy
Fatigue
Aching joints
I’m at my whits end! The fatigue is the worst. I’ve had to give up work. I wake up exhausted and I’m struggling to carry out daily tasks. Even climbing the stairs hurts! I’ve asked for a gyno referral but apart from that I think they have ruled out everything else. I’m 37 so poss peri menapause but the test they did came back negative for that too! Does anyone else have these symptoms and what was your diagnosis? Thanks

I feel for you BexAubs20. Big hug. You're not going crazy. Sadly GPs nowadays lack 'bedside manners' and it sounds like you're totally burnt out. This happened to me 5 years ago, lots of similar symptoms. It is fixable and you must put yourself first for a change.
Sadly NHS tests are not broad ranging so it's like finding a needle in a haystack. Get a 2nd or 3rd GP opinion and keep pushing or go private if you can.

I forced myself to practice mindfulness daily, a walk with a podcast on, breathing exercises, everyone can manage half an hour a day. This helps enormously because our brains and guts are directly linked and stress has devastating effects on the body. The pain in your joints will only get worse if you stop moving, I used to have to stretch in bed before getting up. Sleep is massively important for our wellbeing and health. After surviving on around 6hrs a night for over 20yrs, I now know I need to have 9hrs and used to go to bed same time as my kids when they were little.

It's good you're taking some supplements but I can also highly recommend:
Counselling - get everything off your chest and professional 'tools' to cope,
Having a good cry, scream into a pillow, anything to release that tension,
A 'Mummy MOT', superb for pelvic floor/post natal issues,
Eat lots of oily fish, eggs, nuts and leafy greens - get your 5 a day religiously (joints)
Up your dose of Vitamin D, this affects A LOT of things,
Vitamin C the body cannot store, strawberries, apples, oranges etc x3/day
Try a proper iron supplement like Ferroglobin, or a liquid one by Floradix,
Floradix liquid Magnesium (gut and joints)
Solar Ultimate Calm,
Folic Acid - not just for pregnant women
Just check and make sure to not over do the same vitamins, especially B vits. Most vitamins in excess the body expels.
Chin up. Hope you start to feel better soon x

Hi

You kinda sound a bit like me. I have numerous little things and lots of separate diagnoses, which I just thought "how can I be so unlucky to get so many individual seemingly unconnected things?"

Then whilst investigating back problems I was diagnosed hypermobile possibly EDS. Googled EDS and it's connected with all of my little niggles and odd symptoms eg dry eyes, eczema, psoriasis, hidradentitis, anxiety, back probs, hip pain, bruise easy, sprain easy, gum disease, migraines woth spme crazy neurological symptoms etc. I even have the twitchy eye (hemifacial spasm). All my bloods are perfect (I currently take levothyroxine but all OK on medication).

Don't know if this helps?

Also have bowel issues.
Can you flex your thumbs back flat against your arm?
Touch the floor with your hands flat and legs unbent?
Pull your little finger back 90 degrees from the rest of the hand?

I have two out of three of these and I’m 50 and don’t go near a gym. Was diagnosed as ‘hyper mobile’ in the 80’s and gave had so many jiggling issues and joint mobility issues in the interim years plus so many other issues.

Could I cut ally have EDS?

@spicemaiden the rudeness - and it was very rude - was to me. I have stage 4 ovarian cancer and will likely die of it in the next few years. I have had ascites and it is horrible, it is not just a ‘fat tummy’.

The OP was extremely rude to me when I stated this.

had several people pint out she was wrong I’m really sorry to hear about your prognosis.

she was rude - once, aftr several people had not RTFT and instead wanted to tell her she was wrong. You were one of them.

Im not going to back down on my positions that she was rude, once, on the back of several people saying yhd same things she’d already addressed.

It’s a crappy enough world as it is without people generally extending a bit of grace.

I’m sorry you were upset by my comment and obviously it’s horrific what you have been through and thank god you’re still here. I would assume you would like to give advice and educate others who could be in a similar situation? I have the same symptoms as you described. The last time I saw my GP was over 2 months ago and they have never examined my stomach. You can’t claim to know I don’t have this condition based on some comments on an internet post. With all due respect, this is not me being rude but you don’t have the monopoly on cancer! If affects 1 in 3 people so surely you would be jumping at the chance to help others identify the early symptoms???

Is there? What specific treatments are there?

@BexAubs20 if you had ascites you would have a coexisting serious condition and you wouldn’t be here saying your GP isn’t listening to you

I told you your self diagnosis of ascites upset me because it was clear you didn’t understand how serious and how horrible it is. You told me if I was that easily upset I should get a life.

If it’s two months since you’ve been seen you definitely do not have ascites because by now you would be begging for help from the NHS. As I did in December last year.

Stop being so angry and defensive and you might find you get somewhere.

I was just thinking the same thing.

Are you drinking enough water? have you tried to increase vitamin D levels more naturally?

Or read the post yesterday morning where OP says she probably got it wrong and stop fixating on it (understandable because it’s a horrible symptom to experience, but this was cleared hours ago)

There is no treatment but if you know you can plan and pace your day to deal with the fatigue.
I have many of these symptoms and have been diagnosed with CFS/ME and fibromyalgia.
A blood test showed I had had Epstein Barr Virus many years ago (30) and that was enough to confirm diagnosis .. I had symptoms for 20+ years before anyone took me seriously.

Have you been tested for Lyme disease ?

Exercise will help with your energy levels, even light exercise like swimming

Haven't had time to read through all the comments but please look into a triad of syndromes that usually run together. Hypermobile Ehlers Danlos Syndrome, that usually comes along with POTS and MCAS. I was diagnosed last year with all 3 after 4 decades of suffering. Hope you find some answers soon.

There is a lot of evidence to suggest that 'testing' for Perimenopause is pointless. Your hormones fluctuate far too much.
A lot of your symptoms sound like Perimenopause.

Not necessarily true. Depends on what is actually wrong.

GPs are useless, go and see a functional Dr.

More often than not it will help with energy levels. As will a healthy diet.

It sounds autoimmune to me. Or Mast Cell Activation.

I have a plethora of autoimmune diseases and MCAD. For me, it has been incredibly tough getting diagnosed. My bloods don't show antibodies or inflammation which would help diagnose autoimmunity.

Fibromyalgia is a dodgy diagnosis. No doctor really understands what this even is I will bet you. It feels like a word used to describe a collection of symptoms for which they have not identified the actual cause. ( Imo probably an autoimmune response,MCAD, or Ehlers Danlos Syndrome).

I had EDS and it's unfortunately linked to so many other issues.

Endometriosis, also ask for a print out of ALL your levels. If your levels are all at the bottom end of normal it can cause all these issues. If your absolutely convinced something is going on in your body please self advocate. Diverticulitis is also another possibility but unusual for your age x

Appendicitis.

Great. Let’s keep on telling g those with autoimmune diseases that they’re liars and lazy when they report that exercise exacerbates things instead of listening to them.

fabulous.

@BexAubs20 have you been tested for Lyme's disease?