Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

Help!! Am I going mad?

Oct 20, 2016 8:17 AM

Where do I start?

I want to know what the hell is wrong with my body and what I can do about it.

Over the years I have had various issues, pain, illness, ailments. Lately some things are getting worse and worse, new things starting, old things coming back.

There's constantly something wrong with me, constantly a pain somewhere in my body... Tests fluctuate for various things on n off but nothing serious or urgent... Xray and scans show things but again, nothing too serious....

I am beside myself now, I am struggling, I am frustrated, I am down. It is ruining my relationship always moaning.

I am at a loss. Anyone else like this? Have advice or ideas? I feel like screaming today.

Oct 20, 2016 8:35 AM

I wish I had answers for you. :( Am sure many of us relate to how you are feeling. ((( gentle hugs )))

Oct 20, 2016 12:50 PM

Gemma, no you are not going mad. I really can relate with how you are feeling cause I wonder that about my own self some days. No advice, but gentle hugs being sent your way.

Oct 20, 2016 1:27 PM

I know what you're going thro, for years I was going back and forth between different doctors and dentists with pain in my left ear and regular migraines. All the normal migraine meds never seemed to work and some doctors tried to make out I was faking the ear pain because it looked fine or they'd send me to the dentist who said that my teeth were fine (I had my very first filling at 30!). It wasn't till I went to the dentist that my friend used that the dentist referred me to the maxifacal outpatients that I was diagnosed with TMD because of grinding my teeth and they worked out that my migraines were triggered from the pain building up in my left jaw joint. It was a relief to be taken seriously and have a diagnosis! They put me on a very low dose of amitriptyline and the migraines went from weekly to every other month.
I'm sorry I can't help find a diagnosis for you but keep going back and you will find answers, even if it takes year like it did for me. xxx {{{Big warm gentle hugs}}} xxx

Oct 24, 2016 2:44 PM

Have you been tested for lupus? Sounds a lot like it. Things come and go out of nowhere for apparent reason. Do you have joint pain, fatigue?

Oct 24, 2016 2:51 PM

I always feel soo tired and exhausted no matter how much sleep I get. I do get a lot of pain in my knees, hips, neck, shoulders and knuckles and I also constantly have pins and needles in my left finger tips.
What is lupus? I've never heard of it before and would be very grateful if you could explain a little about it. I have an appointment with my GP on Wednesday so I will ask her when I see her.

Oct 24, 2016 3:08 PM

Oh and a lot of pain in my left jaw as well as left side trigeminal neuralgia in all three branches of my left face

Oct 24, 2016 3:21 PM

Gemma, document every symptom and the severity and duration. Sometimes it takes years for everything to be identified. Hugs love and prayers for strength and patience as you get through it! 🙂💕🙏🌸

Oct 24, 2016 3:32 PM

It's an autoimmune disease where your immune system attacks you rather than protects you. Many Docs don't know much about it. It can attack anywhere at any time. Organs, joints, brain heart.. It's different for everyone and mimics lots of things. One thing that is similar for most is fatigue that no amount of sleep fixes and joint pain.Tests are not definitive. So it's hard to diagnose. You need at least 4 of the 11 markers to be diagnosed. I was just diagnosed less then a year ago at 45 after 2.5 years of pursuing answers. I had 2 Rheumies, my GP, an ENT and a pain clinic all tell me nothing autoimmune was going on. All the while I was getting sicker. One day my jaw locked. In a last ditch effort I went to my GP. While there my fingers turned blue with Raynaud's and he finally believed something more was wrong and sent me to an Internist who could see the illness almost right away and diagnosed me that day. He thinks I've had this since I was a teen when I was diagnosed with Epilepsy aka lupus. I lost my bladder at 28 from extreme IC they are now telling me was also lupus caused. I have lupus arthritis everywhere so lots of pain. The key is get a diagnosis and started on meds as soon as possible to slow down the damage. The disease is progressive and ever changing, unpredictable so it messes with your mind. There is no cure. Don't stop looking for answers until you get them. One of the drugs most are put on is Prednisone. I've turned it down twice. It will do more damage then the disease in the short term and long term. Major weight gain and bone damage being 2 of them.
My markers are below:
Joint pain
ANA positive
Protein in urine=Kidney involvement
Mouth/nose ulcers
Photo/Heat sensitivity
Other common things I personally don't have are:
Malar/butterfly rash. Goes across your nose and over cheeks. Looks like a red butterfly.
Rashes or blistering from being in the sun
Sun causes more joint pain.
Ask also about sjogrens: dry mouth/eyes nose big symptoms and and an overlapping disease. I think I have this too.
Hope this helps.
I'm on a lot of meds to keep me functioning and slow down damage. If you want to know about some of them let me know.

Oct 24, 2016 8:53 PM

Do you have fibromyalgia or diabetic nerve pain?

Oct 25, 2016 12:28 AM

@Gibber thank you soo much for taking the time to explain, some of the symptoms are what I suffer with but I was thinking of either fibromialga or ME/CFS. I hadn't thought of Lupus as I didn't know about it but I will certainly be asking my GP on Wednesday for testing because it feels like some of my symptoms are getting worse not better especially the fatigue and anxiety.
I'm not sure if this would have any bearing on anything but I know there are a few different autoimmune illnesses on my mums side and my paternal grandmother had type 1 diabetes which I only found out the night my 10 year old daughter was diagnosed with type 1 diabetes two months ago (since my mum and biological father divorced, when I was about 3 years old, he choose not to see us so he wouldn't have to pay maintenance so we've had no contact with him or his family since).

Oct 25, 2016 12:36 AM

@mzladybug I don't think I have diabetic nerve pain as my HbA1c blood test came back that I was well within the normal range. I asked to be tested after my daughter was diagnosed with type 1 two months ago.
I have been thinking of fibromialga or ME/CFS but I'll also be asking about Lupus now as well and possibly sjogrens.....as Gibber said about the dry mouth and I've had that from as very young age, I was always being asked if I diabetes because of how much water I drink.

Oct 25, 2016 2:33 PM

Gemma, welcome to the family!! The only thing I can tell you is keep your chin up (keep a stiff upper lip as they say) and try to remain positive. I wish I had some suggestions other than ones given above. I hope you get some answers soon. Meanwhile, settle in and have a giggle or two with us and know you're amongst good people. Who knows, if you're lucky someone I know will eventually make me wet my pants laughing and then post it so you can all have the joy of laughing about it.. LOL!!💕

Oct 25, 2016 2:39 PM

You're very. Definitely if it runs in you're more at risk. Document everything even if it seems like nothing to you.
My grandma had RA same family as lupus. My father and aunt had Crohns and colitis also autoimmune. Another cousin of mine has autoimmune and my others grandmother had juvenile diabetes.

Oct 25, 2016 4:09 PM

Gibber that sounds a bit like my family. Genetics has a lot to answer for!!!
I've got a list of questions for when I go to my GP tomorrow, I'm just soo fed up of the doctors fobbing me off all the time with its because of the meds I'm on. Things are getting worse not better and my meds haven't changed over the last few months so they can't use that now! I'm determined to try and get answers.
If I am diagnosed with lupus would it be OK to message you to talk about meds and stuff so I can know what to expect?
Again thank you soo much, it feels like I'm halfway there to getting some answers (if the doctors listen that is!)
May you have a peaceful day x

Oct 25, 2016 4:23 PM

Gibber what is extreme IC and ANA positive? I'm just rereading your post again to make sure I have my info right going into the doctors. Thank you x

Oct 25, 2016 6:26 PM

IC is interstitial cystitis. It affects your bladder. Mimics a bladder infection. Extreme frequency, constant urge, pain but no infection. Mine was severely ulcerated and shrunk to the size of a Canadian Loonie. I tried everything out there to no avail and eventually had to have it removed. We didn't know it was lupus caused back then.
You can get an ANA blood test if it shows as positive it can indicate autoimmune disease. Again it's not definitive. People can be positive for ANA and not have disease and vise versa. But if you have other symptoms it's another indicator/marker. They do the test if they suspect autoimmune disease. Also ask to get tested for Rheumatoid Arthritis. Lupus and RA are similar in their symptoms, both autoimmune, and often overlapping so many have both or more. One autoimmune disease often leads to another. Ask about testing for sjogrens. That can affect your eyes as well as everything else. If you end up on a common med called plaquinel for autoimmune disease you will want to get an appointment with an Opthalmologist to have your eyes tested as a baseline. If you have sjogrens, they also treat that.

Oct 25, 2016 6:35 PM

Oh btw certainly you can message me. I missed that question earlier sorry about that.

Oct 25, 2016 6:40 PM

Oh yeah fibro is more muscle pain. Lupus is more joint pain. Sounds like you have a lot of joint pain.

Oct 25, 2016 6:47 PM

I definitely have issues with my bladder control and have had many urine samples tested and sent off to be tested and all have come back normal, doesn't seem to matter what I try if I need to go I have to find a toilet pretty quickly!
Thank you soo much for taking the time to explain giving me the the details of what I should be asking for tests xx

Oct 25, 2016 6:52 PM

You're welcome. If that's the case with your bladder then the next test would be a cystoscopy where they fill your bladder with fluid to see how much it can hold and stretch it to see if it's ulcerated. How they look for IC. I asked to be put to sleep for it. You can through it awake but I wasn't going to. Keep talking to your doc about your bladder.

Oct 25, 2016 9:30 PM

I do have dry mouth but the doctors say it's my meds causing it even tho I try to tell them as far back as I can remember (early teens) I've always had a dry mouth and drank a lot of water, I've always had people asking if I'm diabetic with how much I water I drink.
My eyes are not that dry but when I wear contact lenses I have to use a preservative free eye drops to keep them moist after 4 hours of wearing them.
My eyes are very sensitive and get very itchy and dry even if I use sensitive mascara. I've tried them all from the expensive ones to the cheap ones and after 3 or 4 hours I have to take the mascara off otherwise my eyes get really dry and I want to scratch them out!
I just hope my doctor listens and does actually test to either diagnose or rule out further possible illnesses, I'm hoping she will as the last time I went into her she even said that if I try to get a job now more than likely I won't be able to keep it because I'll be too ill to make it in most days with everything at the moment.

Thank you soo much for all the information and I'll let you know what happens after I've seen the doctor tomorrow xx

Oct 25, 2016 10:15 PM

I'm sorry you're going through all this it's not fun. Good for you that your keeping up the fight for answers. I know it's exhausting and frustrating. My doc wouldn't listen to me about my dry either or much else. He said it was my meds but swollen buds..that's not the medications. It was a bit of a victory when I saw him (the GP) the first time after my diagnosis and told him what I had after all the times he blew me off and explained things away. Hang in there. For sure let us know how it goes tomorrow.

Ready to start relieving your pain?

Join Community