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I've been backwards and forwards to the drs for years now - started around the age of 12 - I suddenly developed a problem with my hip, followed by an accident at a martial arts class as a teenage and then exacerbated dramatically when pregnant with my first son 6 years ago. I have since had another child 3 years ago and it's just been downhill from there really. I've had pretty much every test possible and even been hospitalised twice due to chest pains & palpitations and a very bad IBS attack along with an inflammed gall bladder. I have a huge array of symptoms and several conditions which have been diagnosed by a dr. These include: Anxiety, Depression, Asthma, Regular Chest Infections, Lack of concentration, dizziness, dry eyes, mild eczema, chronic fatigue, feelings on unreality, headaches, mirgraines, insomnia, IBS, regular ear aches / swollen inner ear, lack of motivation, confusion and struggle to get words out on really bad days, severe muscle pain over my whole body, muscle spasm, muscle weakness, nausea, night sweats, numb / tingly wrists and hands, pins and needles in my legs, feet and arms, panic attacks, constant runny nose, regularly get the shakes like I have a fever but no temperature, short tempered, have a sore throat most days, teeth clenching / grinding day and night, unrefreshed sleep and sleep paralysis.
The doctor has advised that as a collective all of my symptoms may well be CFS and has now referred me to a specialist for a potential diagnosis.
However this last week or so I've had some new, more extreme symptoms, I wake up after a couple of hours sleep and I have so much pain and stiffness in the muscles that run down my back - along slide my spine that I can't even get out of bed without my fiance help me! And these last 2 days I've even been walking with my head tilted to the right as it's so painful and I can't turn my head to the left! Are these additional symptoms also likely to be CFS symptoms?
(I had some blood tests done 3 weeks ago and they're completely clear).
Sorry for the long post - I'm only 26 but I feel so old and frail I have 2 young children to take care of and I'm really struggling!
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i'm wondering EXACTLY which blood tests have u had done? have u had ur b12, Folate & thyroid (T3 & 4) & TSH checked? and have u been tested for coeliac & Hashimotos disease?
I'm was tested for coeliac when I was in hospital a couple of years back and it was clear but I don't think it was included in my most recent blood tests.
I haven't been tested for Hashimoto's disease but after reading the symptoms a couple of the major ones don't apply to me (dry, thinning hair, slowed heart rate) and I don't have a family history of thyroid problems. Worth mentioning it to the Dr though?
it's important that u get a paper copy of all ur results, as u'll need to know if ur levels move up and down the ''normal'' levels ladder. for example drops from 'high' normal to 'low 'normal are significant, but u won't be made aware of this. have a look @ the Health Unlocked -Pernicous Anaemia Society website to check ur symptoms against the PA, B12 deficiency symptom list.
one of the short coming with getting a ME/CFS diagnosis without having a thorough check on all these auto immune conditions is, that once u get the ME/CFS diagnosis, GP's tend to put everything down to this condition. however, u may actually be suffering a condition that's easy to treat. or one of these conditions maybe adding to an ME/CFS symptom load & compounding the situation. .
My thoughts are with you. Hang in there.
Join the club.
I am sure things will seem clearer once you have been assessed and support is out in place for you.
I look forward to my clinic appointmens every month because I see progress and it's on a timeline because I have to keep a diary .
Stay posithve, keep your heart soft and learn to live a new way. It's not forever!!! P M A
Take each day as it comes and forgive yourself.
Try not to get angry because you use too much energy.
Let us know how you get on and good luck
Yes...I go to a CFS/ME clinic in Pendle, Lancashire.
So far , so good. My therapist is easy to get along with and easy to understand but I often see the sessions as theoretical rather than practical. I come out wondering how does someone who hasn't had a broad education cope. ??? There's just so much to take in despite the ME issues of poor concentration.
I feel drained afterwards...I go home yawning..
What is it that bothers you exactly ?
I feel if you are not getting from the sessions what you want then you should be able to express that to your therapist...
What did you want from the sessions ?
Did you have something in your mind before you attended?
If I can help in any way then just ask, that is what we do on this site...
Hang in there Alison x
By the way, I 'be been going to clinic for 4 months now and I am starting to take steps backwards but that is the nature of the beast: ME. I try to look at every day as the first day of the rest of my life! Cliche, I know but there it is .....lol .....
I am sorry that things are not working out for you and, I agree, you are there for your benefit not that of the therapist!
It sounds like crossed wires.
Maybe you have started off on a bad foot and need to be direct with her to get back to the beginning to start over.
I don't want to sound patronising but if your head is not in the right place when you go to your sessions, that won't help either !
Whilst the therapisrt is the professional in her field, it is your responsibility to communicate with honesty if you are unhappy because we all get it wrong, sometimes!
The difficult bit is overcoming those issues without having a detrimental affect on your relationship with her. to move on for your benefit.
Hey, here's me advising you and I'm in the same place as you and struggling too but, I look at it that if we share out thoughts then hopefully we can take something which will benefit us in some way.....
I guess the fact is you and your therapist may just not be suited !!!
Good luck Alison. give yourself a break and give the therapist a chance....early days yet.
I have given my therapist three chances now and will try once more, I just can't stand the stress if it carries on like this. I am normally a very easy going person, but this has made me very angry and upset and the letter thing happened three weeks ago and the anger has not died down.
I really don't think that we will get on, but you never know.
Thanks for your advice
I'm never sure about being helpful in these situations because we never get to know all the facts... and, as you say, it can be complicated.
I do hope things work out for you. Stress causes so much distress and anxiety. Who needs it ?
If I were to give you a few pieces of advice, I would say:
Believe in yourself completely; thoughts that go through your head are your thoughts and the therapist must respect that.
Put it in writing even if you don't send it cos it's good practice to write down your thoughts and re read them.
As long as you can hold your hands up and say you have not deliberately tried to compromise your relationship with the therapist, then it 's up to her to work through things with you.
Tell her how upset you are about disclosing without your permission..she needs to know how it has affected you.
Good luck Alison 💝💝💝
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