Awaiting CF clinic appointment but...

Brain and nerves
1

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 sad I have 2 young children to take care of and I'm really struggling!

2

Yes, Vikki. I think there's a very good chance that your new symptoms are due to ME/CFS. New symptoms can appear with this illness, especially if you've overexerted yourself. But they can also just appear. The fact that your blood tests are clear is a good indication that, for whatever the reason, your ME/CFS is in a heightened state. I've also had this happen. It can be very distressing, I know. I just take it real easy (as if I could do otherwise) and try to keep my mind calm.

3

hi vikki. wow, u have a lot to contend with there. it must be exhausting keeping up with little ones as well.

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?

4

I've had my folate levels and thyroid checked, aswell as b12 and also vitamin d. I'm not 100% sure of the TSH test but the Dr did tell me she was going to test my thyroid functions.

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?

5

hi Vikki. do u have the results of the Folate and b12 - the actual numbers? if someone has ME/CFS, these B vitamins, especially b12, need to be kept in upper levels of normal. frequently b12 is in the 'grey' area where b12 deficiency neurological symptoms are present. however, GP's just look @ the lab results instead of taking the clinical presentation into consideration & say the blood results r normal. .

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. .

6

Hi Vikki

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

Jinny 💝🎈🐭

7

Is the clinic you go to a CFS/ME clinic? I am so far very annoyed with mine and dread going to the next 'interview' The occupaional therapist has so far caused me a lot of stress which is bad for my M.E. and not helping me at all.

8

Hi Alison

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 .....

Jinny ❤️💚💝🎈😍

9

I understand perfectly what the therapist is talking about it is her patronising attitude and the fact that she sent a letter to my doctor without my agreement with 16 errors in it and two things I did not want her to disclose to him. She keeps mixing up my appointments the last time said I had missed one when she had forgotton to cancel it. I had hoped she would help me manage this terrible illness.

10

Hi again Alison,

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.

Best wishes,

Jinny

 

11

I did not want to rock the boat with the therapist, but i did mention the two things I had not wanted her to tell my doctor and she had a clever answer which was so wrong. I don't want her to think I don't want to get better and for her not to help me. I had written out the mistakes in the letter she had sent the dr, but was frightened to show them to her but now I feel like e-mailing them to her before my next appointment but then again it might damage any sort of relationship even though she has caused this problem, I don't think she will see it like sending it. She did not seem to think it mattered about disclosing things I had not wanted her to even though I explained how imprtant it was to me. It as far as I am concerned might have spoilt my relaionship with my doctor, I have not been able to see him yet as he is on paternity leave. I might even have to change doctors because of it, sorry it is very complicated.

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

Alison

12

Hi Alison,

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 💝💝💝