Hello am 29 and a mum to a 6 year old daughter, (this post might be a bit long sorry but I really appreciate you reading and some advice/help). My health has literally just declined the past 4 years it started with partial seizures which doctors said could be a type of epilepsy, memory problems and then migraines.. The migraines are chronic and constant they are really severe and painful, I get pain in my eyes, temples, side of head and back and face.. and they make me get my words wrong when am talking.. But I’ve noticed that I have this problem talking even when I haven’t got the migraine..
I also have a host of other symptoms, I get really dizzy, vertigo, I am constantly tired and I mean like where I can’t even hoover my floor tired and I just need to be sitting down/in bed.. I get muscle twitches in my eyelids, top of arms, thighs and in my back.. you can literally see the muscle fluttering away under the skin.. I also get chest pains and painful ribs and pain in my wrists and arms at time’s.. I get rashes all over my body so my legs, torso and arms, it’s like hives that get really itchy and can get some bruises with the rash.. I feel like I’ve got the flu most days so just tired and achy and heavy body feeling.. I also have weight loss (but that could be too cutting out grain/sugar) and I don’t have much of an appetite anymore..
I literally can’t cope with being in chronic pain and feeling so sick all the time.. I feel like am going crazy like my body is just attacking itself and that something is wrong with me?? Does anyone else experience these symptoms and have you been diagnosed with anything?? I have cut out sugar and grain, caffeine and drink a lot of water.. I’ve had blood tests in the past (don’t know what they where actually testing) and vit D and folate have been A bit low In the past.. It’s like since I was pregnant I have never been the same, I was so sick in my pregnancy and my daughter was premature at 27 weeks (she’s healthy and strong thankfully) and I’ve just gone down hill since.. I have a GP app Monday and I don’t even know where to start, I feel like my dr just doesn’t take me seriously and doesn’t understand how low my quality of life really is right now and how debilitating all these symptoms are.. thank you for reading and I really appreciate any advice/answers. X
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rhea_smith1991
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Hello, I’ve seen one in the past over the seizures and migraines but not everything else but I am seeing one over my migraines the beginning of October so I will bring it all up then.. Also I have a GP app next week so am writing it all down and showing my dr as I really think there is something else going on with me.. Hope your well x
I do know, from my own experience, that often the cause can be the reason for multiple symptoms and yet perhaps not all. You need a real good doctor, neurologist or internist to look at all of your symptoms and then get supportive tests to decipher complicated problems. I personally have ultimately been diagnosed with Parkinson’s. I presented with over 10 symptoms. They were all related to Parkinson’s. Six years past diagnosis, I am on three medications which help the symptoms tremendously. Cheers and good luck to you, I hope you find out what is causing your issues.
Aww am glad you have started to see improvements now you are on the right medication and have a diagnosis.. I have wrote all my symptoms down on paper and even looking at that paper I feel like crying for myself and I know that sounds pathetic but I suffer so much and for too long.. Am only 29 and have a 6 year old daughter and my quality of life right now is awful.. Am hoping my Dr and Nuro listen to me and take me seriously and try and help to see if there is anything else going on.. x
I hope the doctors figure your issue out soon. When I was in my early 30’s and felt like I was dragging my way through life, I finally just accepted it and got up every morning and made the best of it. But honestly on little to no sleep, some days were hard! I was diagnosed at 55. I believe when I was young they looked at all my symptoms separately...... and so did I. And I tried not to complain and I didn’t go to the doctor much cause I just thought everyone was dealing with the treadmill of life the same..... but what I had was more than that. I truly hope they figure out what is happening to you! Good luck!
Rhea you are not pathetic. You and I are so similar and we do need someone to help us to figure this out and not say lessen your stress and it’ll get better type of thing. Many hugs to you and I do hope you finally get some help with the new Neuro and the gp. I know it is very hard like this.. we have so many similar symptoms almost identical.
Outside of the pregnancy issues, I'm a 49 year old male, I have almost the exact same things happening. Pain is incredible, no meds have worked other than some relief from medical marijuana. Other than knowing I have been diagnosed with peripheral and autonomic neuropathy no-one can find the root cause yet. It's been 2 years. Can't work, walk, breathe, chew, eat, go to the washroom, double vision....the list goes on. I wish you well and keep posting hopefully we all find answers.
Aww am so sorry you are suffering! I know how you feel! My GP is useless and suggested I try yoga 🙃 she thinks because am young and don’t smoke that there can’t be anything going on! Am changing drs as soon as I can and getting some private blood tests done.. hope your ok
I hope you find a good GP soon - keep looking until you find one that takes you seriously. I can't believe your GP hasn't arranged a blood test with all the symptoms you have. Even if the test shows everything is 'normal' it's worth getting so you know what to rule out etc. Take care
Hi rhea_smith1991 so sorry to hear how you're feeling. Have you had your thyroid checked. I was like you many years ago after the birth of my second child. Dr didn't take me seriously, and took ages to diagnosis with a simple blood test. There are many symptoms of underactive thyroid. I like you lost my appetite so didn't gain weight as most people with this do so doctor didn't test for it so took ages to diagnosis. Hope you get help and don't suffer, insist on getting to the bottom of your symptoms. Good luck x
Am changing GP as soon as I can! My doctor told me to try yoga and and just think positive and think I have the whole of my life ahead of me, and this will all be stress.. 🙃 how bloody helpful!!! I literally didn’t even try and argue I just walked out.. I hate the fact because am young and don’t smoke in my doctors eyes that means there is no chance of any actually health condition going on!! Think I will pay private for a blood test and get my thyroid checked.. thank you and hope your well
Hi Rhea. Sounds like this could be autonomic dysfunction/neuropathy, which many now believe is the culprit for ME and CFS. Are you in the UK or USA? There's a POTS group on here, and also ME I think. Parkinsons disease is related to the autonomic nervous system too. Hoping someone has done all the blood tests for autoimmune antibodies. Do you take any med's to help with the migraines? My husband has had migraines all his life (now 49) and just over a year ago he was eventually prescribed beta blockers for prevention, and given sumatriptan to take if he feels one coming on. The number has reduced drastically (he used to have one a week at least- now maybe one a month) and the suma' works within 20 minutes if he takes one straight away. x
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