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Feeling frustrated with everything!

Oct 27, 2016 3:19 AM

Yesterday I went to see my GP with a list of this to ask and I brought a urine sample because I constantly feel like I have a water infection. she dipped the urine and said there's no keytones or sugar but I have white blood cells in it. She wasn't worried but was going to send it off to the lab to make sure.

I told her how I've been feeling and how much I've been sleeping, I even showed her the diary and charts from this app. I asked her about Lupus, fibromialga and ME/CFS.

She said that one of the markers they look at that was in my previous blood results was on the low side and my thyroid was smack in the middle of normal range, the only thing is I'm borderline anemic. She wants me to redo my blood tests with a few extra ones on top to look at different markers I think and my HbA1c.
She hasn't changed any of my meds including my antidepressant, she said it hasn't kicked in yet.
I was in tears by this stage because I'm so frustrated and so tired of feeling like this.

I asked her why if all my bloods have come back ok why am I feeling worse, why am I feeling exhausted all the time and why my clothes are feeling bigger yet my scales are saying I'm not losing weight.

She thinks it's all linked. My high pain, my very high anxiety, my very low moods and my fatigue she says are all linked and now that I'm divorced, away from our old home, out of the woman's refuges, I have things in place to help my two children, the fact my daughter was diagnosed with type 1 diabetes and that my ex husband keeps intermittently sending messages to my family and letters for the kids to my mums are all linked and now that we're in our own home and I now have time to breath it's all repressed emotions and memories starting to come up.

That I probably have Post Traumatic Stress and the reason I don't see it is because I've had to cope and I've had to carry on, I didn't have the breathing space to cry, be upset or greive.

I've only just started to see a CBT counsellor which my GP thinks will help me but because I feel like I'm falling apart and not coping she's going to get a mental health nurse to see me. They should be able to help me with different things like possibly getting me help for around the home and help with different benefits I should be entitled to and with bits like that. I'm not sure if it will help or not at the moment but I'm willing to take any help that will help me function for my kids, if it wasn't for them I don't know where I'd be right now!

All of this is fine for the future but it doesn't help me now, it doesn't help me function now and doesn't stop my kids from seeing me how I am now.....

Oct 27, 2016 3:35 AM

Im so sorry you are going throuh all this. I hope the cbt helps and the home help works out. I really hope they come up with a physical solution as well. I understand what you're going through, I promice you things do get better.
We are all here for you.
Gentle hugs

Oct 27, 2016 4:16 AM

My symptoms came on much like yours did...I've been reading that high stress situations can bring cause fibromyalgia and I believe that fibromyalgia causes other auto immune diseases to surface. I hope you find a good combination of meds to help your symptoms! Soft hugs friend!

Oct 27, 2016 1:11 PM

It's so frustrating when everything takes time. Especially when you need help like yesterday. Am.so sorry about that. I do think her recommendations will help to get your body back in the right track. She made a lot of sense. I was my fiance's care giver the last year of his life. I already had the Fibro. and some other issues but for this time I was pretty much running on adrenalin. When Keith passed and I had time to process things I fell apart. Fibro was worse. A few other new diagnosis kicked in. So prolonged stressers can and do play a role in our health.

So hoping relief is soon in its way. I know you don't want your children to see but one thing I have found is that children pick up a lot more than we think. Letting them know (on their level of understanding) what is wrong and finding ways they can help gives them a sense of somehow being One of the people in charge of helping instead of feeling they are in the way. Have also found that these children grow up with self confidence and with a higher ability to be compassionate to others. That's a plus.

A friend of mine wrote a book called Rayvens Doll. It's a book to be read with kids. It was written to help kids understand Fibromyalgia. Am betting it would help though to explain any Chronic Pain issue.

Oct 27, 2016 2:07 PM

I feel your pain. I'm not convinced I have fibro but they are leaning toward it. They were sending me to a neuro for ms, but decided they aren't convinced but I'm very symptomatic. So it's been two years of back and forth and each time I go I think I'll crash. I think I'll sink into a darkness and not come out. Today my doc prescribed me to walk/lose weight and talk to a therapist as well. I do need both, I also need a doctor to see what I'm dealing with and offer medical assistance.

Oct 27, 2016 5:08 PM

Sezzy, I'm sorry to hear of all you have been going through. Outside stressors can and sometimes do cause physical symptoms. But I was also being looked at for 2 years as having MS, and the neurologist told me even though my tests were negative it could take years for actual positive results to show up. In the meantime I've been dx with multiple other issues. I've been struggling with symptoms since 2007, for those that have put me permanently out of work. Everyone's struggle is usually a long winding & frustrating roads with more than a few doctors before starting to get answers. Just keep good notes on your symptoms and your appointments. At some point you are going to come across the doctor with the key that opens the door. And we are all here for you. Hugs love and prayers! 🙂💕🙏🌸

Oct 27, 2016 5:34 PM

Thank you everyone, sometimes I get so frustrated with how I am, the pain I have and that it just feels like I'm going backwards not forwards!

JulieK everytime I see a doctor and explain what I'm going thro their first response is stress then they tell me I don't have the markers for anything but when I'm in the worse way where the pressure points are bad I'm not at the doctors and when I am the pressure points seem to go

Mimikay would that book be available on amazon for kindle? At the moment if I thought it would help my 2, particularly my daughter, I'd try anything!
It's hard with my kids they've already seen soo much and at times the ex actually directed his anger at my son then later when he'd left the house and moved so close he started on our daughter and was flowing us everywhere. I believe that and trying to get a non-molestation order against him are what brought on the trigeminal neuralgia and because of this the kids see me very unwell last year and admitted to hospital three times (two for the neuralgia and one for withdrawal from the meds the hospital doctors stopped then sent me home the same day).
I've been in a bad flair now for almost 5 weeks with everything feeling like it's getting worse so I've been wearing the lidocaine plaster on my face where it numbs the area and I've been taking extra meds for the pain and for vertigo. If I wear the plaster once in a while Jo is fine with it but because I've been wearing it nearly everyday she knows I'm in a lot of pain and has become very worried about me and thinks I'm going to end up back in hospital. All this and her diabetes has made her very anxious and has brought back her stomach cramps which stops her eating which was why she ended up going to hospital to be checked over by the Pediatric Diabetic Consultant.

I feel I'm between a rock and a hard place with no idea what to do. I try to talk to the kids about it, AJ just says can I go play on my PS4 and Jo starts panicking thinking the worst is going to happen no matter how much I try to reassure her.

It's bad but I can't wait for them to go back to school next week because they don't see how bad I really am during the day.

Oct 27, 2016 5:43 PM

Flappys and MrsInvisiBell at the moment it is so frustrating but at least the doctor has ordered more bloodtests which I'll have done on Tuesday.
One minute the doctors look like they believe me then the next they're saying something else and I feel like I'm going mad.
I've even had one doctor go as far as to say I should go out and look for a job as it's only a bit of pain and some anxiety and the benefits people won't let me stay on the disability benefits.....then another doctor from the same surgery (the one I saw yesterday) said that at the moment I won't be able to keep a job because of how bad I am at the moment!!!

Oct 27, 2016 8:22 PM

Sezzy, I'm sorry for your turmoil. I, too, repressed much over my lifetime (I'm 51) and when things get stressful for me everything comes to the forefront and I don't know how to cope. All day Wednesday and all night into today I had a wicked meltdown. Thank goodness I have a very patient BFF who held me close to her heart and held my hand through it. I have a hard time leaning on people. I'd much rather be the one helping than the one asking for help or needing help but she is helping me accept that it's ok to let someone love me and help me and to need that help from time to time. Don't know what I'd have done without her because I was in a very dark place and was embarsssed to even have her see me like that.. thing is, she sees me anyway, and I've never felt the need to hide behind any walls with her. Funny thing is,
I can see and feel her as well. A connection I've never had with another human being and I feel safe and getting myself to the point where I have opened myself more than I already was (I didn't thing I could be any more open than I was). Imagine ONE person on the planet that you can lay yourself bare with and there's no judgement in either direction and the bond is unbreakable.
I hope that you are able to get the help you need. I hope that you feel comfortable with the therapist to let out the things you need to abd that you have the support of a BFF that will hold your hand and never leave. Sending well wishes, gentle {{{Hugs}}} and good karma your way. As they say, "This too shall pass" it's just a matter of time.💕

Oct 27, 2016 8:41 PM

It sounds like your tests aren't fully normal. The trauma you've been through can trigger the start of Lupus. Don't give up finding answers. Can you get all your medical information, test results and such and get a second opinion. Thyroid disease is also autoimmune disease and being anemic is a symptom of autoimmune. Many have had docs explain things away as mental illness when it's actually autoimmune disease as well. Find out what white blood cells in your urine mean. Do some Google research. Docs don't actually know a lot about this stuff. Could you get in with a Rheumie or an Internist?

Oct 27, 2016 8:45 PM

The white blood cells in your urine can indicate inflammation in you urinary tract or kidneys. Lupus is known to affect kidneys and also inflammation is a huge symptom if lupus and autoimmune disease.

Oct 27, 2016 11:36 PM

Gibber your right on! That's how I found out I had Lupus last year, the white blood cells and the terrible rashes I would get after being in the sun, so to back that up they did a biopsy of the rash and it came back autoimmune disorder which was Lupus, and I was diagnosed with the fibro 6 years ago

Oct 28, 2016 3:19 AM

Gibber thank you, you are a world of info!
This is probably the 4th or 5th time now this year that white blood cells have shown up in my urine and I constantly feel like I have a water infection but no keytones or sugar show. I have pain where the kidneys are but the doctors just dismiss it saying there's no infection and don't say much about the kidney pain just that I must of slept on my back....I can't sleep on my back unless I'm in a bed where I can put my legs and back slightly up so I'm not flat on my back. If I do lay flat my lower back and hips absolutely kill me and it takes me ages to get up.

Fibromzpaul I don't get a rash but I am prone to burn and get a prickly heat rash which soon disappears with some cooling after sun and a antihistamine.

Thank you all I hope you're all having a peaceful and low pain day/night xx

Oct 28, 2016 3:35 AM

Alwayz I struggle so much with asking for help or a shoulder to cry on and I can say that if it wasn't for my two I wouldn't be asking for help now, I would probably have already dropped into the black hole of depression. I've always made sure that the kids have had the help they need and if it's not given then I fight to make sure they get it but won't do the same for myself.

I haven't made any real friends where we're living now and I lost all my friends from where I used to live firstly because of the ex then secondly because we had to move soo far away but towards the end before we moved a lot of them started to distance themselves from me because of how ill I felt.
I try to talk to my mum but I can see how much it hurts her then I see the anger she has towards him.....f he did ever show up at hers my dad would probably have to hide the sharp knives! !!

Oct 28, 2016 2:50 PM

Sezzy, I forgot to mention that I keep having various Isadora with my white blood count; in urine and bloodworm. There is one doc who thinks it's because of the Interstitial Cystitis, and another who thinks it's my hypothyroidism, sjogrens, OA and other issues, and a third doc says they don't know. It's been showing up since 2008. As long as I'm not sick from it I try not to stress over it.

Oct 28, 2016 3:42 PM

I lost my bladder to IC. (Interstitial cystitis) Now all these years later they are telling me it's lupus that caused the IC. IC feels like a bladder infection and mimics it in every way. But it's actually a shrinking bladder often ulcerated. Do not let them blow you off with indication of bladder/Kidney involvement. Ask to be seen by a nephrologist. Lupus attacks kidneys sounds like you have kidney pain too.
I don't get rashes from the sun either with lupus. Not everyone does. But I can't stand the heat or brightness. I over heat fast. Makes my pain worse.
Doctors work for you. You need answers. This can be a dangerous disease if you have it. There is lupus nephritis as well we're it attacks you're kidneys most or first. There's often no symptoms in the beginning. You have indicators. Do a lot of research. Go in knowing your stuff so they can't blow you off.

Oct 28, 2016 3:53 PM

Fibro I'm sorry you have lupus too. It sucks but I'm glad you got answers. What do you take for it? I was on mtx and plaquinel until I couldn't breathe on the mtx and it started causing migraines and lots of auras. The fatigue I worked around. Now I'm still on Plaquinel and switched to Imuran. Also perocette for pain. I turned down Prednisone twice. That's one med I will not take. Too damaging and dangerous to want it ever. I'm also on anti seizure meds. I limit the amount of antiinflammatories I take do to risk of stomach ulcers and kidney damage. They want me on stronger doses then I feel comfortable with. I take one Advil a day. On really bad days 2. Right now I'm on more because I just got a bad injury.

Oct 28, 2016 4:11 PM

I was recently on Prednisone, but I stopped taking it last week! and i quit the Lyrica, it made me so sick and retain fluid so then they put me on lassexs, I've had the worse time with my right kidney, I can't drink anything dark or anything with caffeine or I lose control of my bladder and have the worse pain. So I'm strictly on water and green tea, I also take muscle relaxer and hydrocodone for pain, nothing helps though

Oct 28, 2016 7:43 PM

Gibber I've started getting light cramps in the lower area of my tummy today, not period cramps, cramps that I've had when I've had a water infection and they're constantly there and when I go to the loo I have a tingling sensation like I can actually feel the urine leaving my bladder and going all the way down and out. It's such a weird feeling but it doesn't hurt or burn at the moment.

I've got my appointment with the pain clinic on Tuesday so I'm going to ask the pain nurse as well because this is soo frustrating and soo tiring that it's starting to affect everything in my life to the point that I haven't slept during the day yesterday or today and the 45 minute drive from mine to my mum and dads was soo hard. IF I hadn't of had Jo in the car with me to talk to me and keep my mind active I would of fallen to sleep at the wheel and had a serious accident.
I told my dad and he just looked at me like I was an idiot. Even tho I'm at my mum and dads most weekends I try not to let them know how bad it really is but I think I'll just have to lay it down for them.....my mum I think sees more how bad I am but my dad is another story. They run a pub and just because I grew up in the pub game and was serving behind the bar from the age of 13 (I was a very developed 13 year old!). My dad expects me to still go behind the bar and serve like there's nothing wrong..... tried that a little while ago and after 5 minutes I was a complete mess, my hands were soo shaky that I spilt half the pint before I could get to the customer, my mum sent me upstairs to get me away from the bar before I had a complete meltdown. My dad still tries to get me working saying I should be over it by now and that I should just do it and not worry about it.....don't get me wrong he has helped me soo much since my separation and divorce but at the same time he can be the biggest arsehole going and expects everyone to do what he says! Needless to say there's always something in me that has to challenge him!!!
Sorry I've digressed again but needed to get that out before I exploded.

Oct 28, 2016 11:07 PM

I'm sorry to hear that he's not more understanding. That causes a lot of stress too. I don't have my family in my life. They're abusive and always have been. I have a supportive I'm grateful for.

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