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FM, PTSD and other lovely illnesses

Feb 05, 2017 4:58 PM

Hello all, my name is Tasha I'm 23 from Hampshire (UK). 18months ago I was in an accident with my husband and daughter, some guy rear ended us at 50mph while we were stationary. Over the past 18 months I have seen multiple doctors and professionals such as vascular surgeons, Neurologists, psychologists, psychiatrists, Orthopaedic surgeons and the list goes on. They have just told me that all my symptoms are telling them Fibromyalgia.... so alongside the normal PTSD and my panic phobia and anything else they have said I now have to learn that I could be this way for the rest of my life?! Some days I have to drag myself out of bed to take my daughter to school, others o have to force myself to drag my body out of bed. My memory is so bad and the aches and pains and lack of sleep? I just can't help but feel it's not getting better! I know others have it worse but these last 18months have been the worst in my life it has been one bit of bad luck after the other. I was in my mums car last week and again some guy rear ended us!? I am now back to the point thinking of getting in a car makes me feel sick and panic attacks come on. I've just come to the realisation that at the age of 23 I have no friends... and that's no exaggeration. I live in the middle of nowhere and no one messages or comes to visit or bothers at all. Please can someone tell me it's going to get better? That they have been where I am? Oh and any help on sleepless nights and restless leg syndrome would be great!

Sorry for blabbering on!!!

Feb 05, 2017 11:54 PM

Hi Tasha and welcome to the crazy family....we all need a little bit of craziness in us sometimes to get us thro our days!!!
Everyone here live across the globe and you'll find that everyone will respond at different times so don't worry if you don't get a response right away. We're also very supporting, friendly and non judgemental. We're here to lend a listening ear when you need to rant and rave, shed a tear with you, laugh and celebrate any laughs, achievements and good times with you. We all live with chronic pain so we know how you feel.

I'm soo sorry that you've been in two accidents where you've been rear ended and that it has left you with PTSD. I know how hard it is to cope on a daily basis with PTSD.
I've found CBT counselling wasn't any good for me as it triggered me and made me feel worse each time I went but I'm now seeing a primary care mental health nurse who is lovely and is helping me with real time strategies to me get thro my day. I've also been referred to a couple of different agencies to help me with some of the things I really struggle with like the Mind Befriending Service and the Live Well service to try and get me back on my feet again hopefully and make friends......my 2 kids and I have been thro a lot in recent years and have had to completely up roots and move to a completely new area we've lost all our friends and network of support and I've not really made any new friends yet so I'm hoping these will happen me make new friends.

Unfortunately it's going to be trial and error to see what is going to help you, with the PTSD you should try CBT counselling as it can help and has helped many people or if you have a good mental health nurse, they can help no end. Ring Mind the mental health charity to see if they offer anything in your area and I've been told the Live Well project is excellent.....I'm afraid you're going to have to look up their numbers for your area as I have been referred to theses by my daughters Pediatric Diabetic Team and school in the Kent area. I was told that I could self refer or they could refer me but I've been dx with social anxiety as I really struggle with talking to and meeting people I don't know.

I'm also in the process of being sent to rhaumatology to find out why I'm in a lot of pain all over my body.....I was dx with trigeminal neuralgia nearly 2 years ago now which gives me a lot of pain in the left side of my face in all three branches of the trigeminal nerve....eye, ear and jaw.

For the fibro there are a few things that can help....but remember everybody's different and what might work for me might not work for you, it's all trial and error!
Have you tried having a warm bath with 1-2 cups (maybe more) of Epsom bath salts for more than 20 minutes? It's very good for relaxing your muscles.

Magnesium supplements are very good for helping nerve pain and relax muscles, I've found since using them my muscle twitches haven't been as bad or as frequent.

I'm borderline vitamin D deficient so my Dr has prescribed vitamin D supplement. It's very good for helping your body absorb other vitamins and minerals and it's also nicknamed the sunshine vitamin!

I'm also borderline iron deficient so I've had to buy a iron supplement suspension which is easy on my stomach as the normal iron supplements are too harsh for my stomach.

I also take a vitamin B complex as it's meant help with tiredness and fatigue.

Have you tried a heat pad or a heated blanket, they're very good and soothing when you use them.

Bear in mind that the minerals and vitamins can take up to 6 to 8 weeks to get into your system and you start to notice anything.

I hope some of this helps you xx

Feb 06, 2017 1:54 AM

Thanks sezzy, I'm currently undergoing the whole CBT thing but can't say it's doing any good 🤔 but I will try anything that will help. This is just the start for me and it's going to be a long road I need to learn to cope and I think that's where I'll struggle. My social anxiety is horrendous so meeting people and talking to people is a no no for me. Thank you for all your advice I'll keep you posted as to how it goes!!!

Feb 06, 2017 2:49 AM

Do you have a mental health nurse? I did 2 lots of CBT counselling last year and neither of them helped much at all, in fact the last counsellor actually triggered me so each time I went my scores on the depression and anxiety went more extreme! I stopped going after 4 sessions.

My mental health nurse has been a god send and thinks that the troubles and repressed feelings has probably brought on fibro and/or CFS/ME.....I've been referred to rhaumatology to rule out what it isn't!

There are some things that I have to do no matter how bad my anxiety is because my daughter, 10yr, was dx with type 1 diabetes mid Aug last year I have to take her for appointments at least every 3 months but because of the past, me not being well and her own anxieties I now also have to take her to see the diabetic psychologist every other week so my own anxieties get extreme, they now put me into a side room to wait because the waiting room is just too much 😢
Maybe with you could just start with a phone call or messaging someone to help you talk to start your journey of healing, you can message me any time my sleep pattern is all over the place so if I'm awake I'll answer if I'm not I'll probably answer within an hour or two

Feb 06, 2017 5:27 PM

I don't have a mental health nurse, as my diagnosis is only just being sorted and we are still searching some areas they haven't appointed me any specialists yet.

I'm a little stuck really as the doctors system here works fairly odd and they won't recommend anything unless I ask for it so I am stuck on what research to do and what to ask for :( it's all too new and difficult to take in!

Feb 06, 2017 6:33 PM

Hey Tasha ... You have far too much in your plate.

PTSD, general anxiety disorder, chronic back pain and undiagnosed FM ( stupid dr).Oh and apparently some depression although I have no idea why. Snicker That's my DX s

I preplan everything out in my head which helps me overcome a lot of my anxiety... Although your PTSD and cars make things so tricky for you. I just make different choices now ... I just know concerts are too much for me for all sorts of reasons. I shop as early as possible .. less people.

I have had years of poor sleep... Which has been linked to FM and trauma. I have stopped some of my meds and I have tried the supplement 5 htp .. it has helped along with eleminating gluten. I may try eleminating some other food to see if that helps.

The 5 htp can't be mixed with antidepressants and some other meds. My mood is much better and I have better sleep. . Sometimes a longer sleep as well. Woo hoo!!

I use rescue remedy often ... As well as GABA chewables. To help calm myself.

Its many years past my cause of PTSD .. but knowing the risk remains means it is less but the underlying fear remains for me.

If possible focus on getting better sleep ... Ha haha. Yes I read you're a mom. My son used to wake between 4-5 am for
years. Now it's around 5 am sometimes or later.

Restorative sleep does make a huge difference. I wish I had more ...

Glad you found this app.. lots of great people happy to listen support and share.

Welocme, you have a place to connect and you will be understood here ...


Feb 07, 2017 3:32 AM

Thanks foggurl, appreciate your reply!

There is a long road waiting ahead and that's all I'm seeing, I'm ignoring the facts that I will some day learn my triggers and get around them, I will learn how to get around the PTSD and car situation, but right now I'm feeling so so low because I'm slowly coming to the realisation that all my friends I had aren't actually bothered with me unless I'm having a really good day and not complaining about some sort of pain! I'm so tired of being made to feel bad because I have to nap in the afternoons and sit down when it all gets too much. I've taken a step back and started staying home a little more and now it's my fault because I'm ignoring them? Yet they never message me unless it's to ask when I'm going over to their house. *sigh* it's all just added dramas that I really don't want or need. And it doesn't help with any of my worries.

Not slept for 2 nights in a row now because I'm worrying so much about things that haven't happened yet.

The doctors are really taking their time to finally diagnose the FM so that's a pain in the backside because when they do I can finally seek help but until then no one is interested 😞

Feb 07, 2017 5:41 AM

If the CBT counselling isn't helping you then you need to say that or tell them that what they're doing with you isn't working so well and do they have any other methods that might help.
My last CBT counsellor actually triggered my PTSD and she also kept giving me leaflets to read without explaining them knowing that my concentration is soo bad that I can read a line about 5 times and I still couldn't tell you what it said! It was after that that my Dr referred me to the mental health nurse. It may be worth talking that over with your Dr at your next appointment?

Your PTSD is a difficult one because it is still very much new and revolves around cars so I'm not really sure what to suggest that would help.

Do any of your friends have kids the same age as yours? They could come over for a play date and that way you might not feel soo isolated?
Unfortunately people who don't suffer with chronic pain and/or chronic fatigue won't understand. There's a couple of things that might help them understand a little bit......one is the spoon theory and the other is a letter to "normals" I'll see if I can find the links

Feb 07, 2017 5:44 AM

That's the spoon theory link

Feb 07, 2017 5:52 AM

This is the letter to normals

Feb 07, 2017 6:42 AM

I will speak to doctor about the CBT, as for my friends they all have kids a year younger than my daughter, but they aren't really interested in doing anything that doesn't suit them. I live half hour away from them all so they wouldn't travel to me. I have lived in my bungalow for a year now and not had one visitor! :( sad eh!

Thanks sezzy I'll have a look at them links!

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