Could this be Chronic Fatigue Syndrome?

[clairethewitch70]

I see my GP every two weeks routinely (his idea not mine). He has mentioned CFS in passing when discussing my health, but I always thought no, as I was functioning more at the time.

Now I am slumped over my laptop, no energy to even go to the toilet or eat, gradually getting worse over the past weeks. Difficult to walk, legs like jelly, hold wall getting from room to room, just want my bed.

Current diagnosis' include fibromyalgia, BPD, Hashi's, vit d deficiency, psychotic depression, spinal stenosis, multiple tendenopathy and arthritis in various sites. Last week minor surgery to remove a suspicious mole on shoulder blade.

I am so worn out. Work from home but getting nothing done lately. PIP home assessment next week (was on lifetime DLA).

At aged 46 it's not unusual to experience worsening pms symptoms / perimenopausal symptoms which include fatigue, low energy, feeling like you've been hit by a truck, verbal memory loss.....just a thought x

But more unusual at 49 to have less fatigue/memory loss/fog oh & shitloads less pain

If you're on 3 different strong opiates is the fatigue not a side effect of those?

Katymack, I assume from your postings on this thread, and your list of supplements that you have had genetic testing for Mthfr gene mutations?

If not, it's well worth paying for genetic testing (it's around £130 for the kit and some additional analysis of raw data), 23&me gives you all the raw data, which can then be run through some 3party analysis sites that will give you a personalised report on your individual "defects" and how to eat or supplement to minimise your problems (I'd rather say genetic variations rather than defects, because I think, in the absence of modern diets and lifestyles these variations would be causing us very many problems).

The link between Methylation detects, hyper mobility syndromes, fatigue, pain, autoimmunity gut and absorption issues etc seems to be a massive iceberg, only now becoming noticeable above the water... because genetic testing is becoming cheaper and more accessible to many more people than ever before.

Living, yes I agree, the GP you get, and the first thing that's written about your illness can determine the was that illness is viewed by every other Dr who looks at your notes... unfortunately the GP I had as a late teen/early twenties patient mostly decided it was all in my head... I found it both stressful and difficult to get any testing/answers and for a long time just suffered in silence because I felt demeaned and not believed (this is despite having a DH who is a very switched on and up to date GP!).

I haven't; the main deficiencies were diagnosed (zinc/iron/folate/b12/D) the other 'go' with those like iron & vit C

Is it really worth it?

And Are you talking about this gene? ghr.nlm.nih.gov/gene/MTHFR#conditions

There is nothing in here about "hyper mobility syndromes, fatigue, pain, autoimmunity gut and absorption issues etc". I don't know where you're getting your information from but it's not mainstream science..

If you have the money to spare I'd say YES. The amount of information you can get for that money is absolutely astounding. It's real give-the-power-to-the-individual stuff IMO, and in the opinion of my DS (qualifies as Dr next month), that this is the future of medicine- everything optimised for the individuals genetics

Also there are huge ethical issues about home genetic testing: what is done with your information and who is it sold to? Also, the effect on an individual who is told they have a certain gene without the medical background to interpret and understand what that means for their risk.

It is not something to do lightly.

Well, I didn't actually mention the mainstream, I though maybe my massive iceberg metaphor just being noticed now, would indicate emerging science and/opinion

As the individual, I took those decisions, I'd rather know the risks or my carrier status. Other can make their own decisions, and choose not to test.

I disagree with the idea that NOBODY should be allowed to test because some people don't want to.

*other people

There are one or two ethical issues with gps telling me I'm just depressed for over 20yrs when very simple vitamin supplements have changed my life

I m considering it (& was previous to this thread) but the interpretation is an issue plus getting mainstream health are professionals to read/understand any results

It maybe that I will pootle on for a bit (assuming I get no worse) & look at it again in 6-12 months

Vit d testing was hard to get a year or so ago & now costs less than £30 so it may be worth waiting a bit

alpaca opiates make my fatigue worse so that could definitely play a part. It's difficult when you're dealing with pain and fatigue from several different illnesses/conditions because treatment for one can often impact another!

Ignoring the tangent because it's not really helpful for the OP.

Before I forget, could your Hashi's be playing a part here? When were your levels last checked?

okite thanks I will mention to Gp at next visit.

cake I thought perimenopausal too, as people with hypothyroidism tend to have earlier menopause but tests about 2 years ago were ok.

alpaca yes, but just after taking the oxy, it gives a burst of energy for an hour or too - thats how I got so addicted

Living There has been complications with my thyroid levels. I have dysphagia and stopped all meds Easter 2015. Triggered psychotic depression and pseudo dementia and BPD. Started taking liquid meds 6 months later (thyroxine tabs disperse in water) and it has taken since then to stabilise levels - last was a month ago 2.81 - previous month was still in the 5's. When I stopped, TSH was 14. So I suppose I still have some residual effect. Moral of story - don't stop thyroid meds. I was so ill mentally that I couldn't deal with meds.

Stopping thyroid medication gave you borderline personality disorder? Or do you mean something else by BPD?

Ah claire you've had a rubbish time of it. it's a lot of stuff to juggle. Would definitely think more tests would be best before adding another diagnosis to your plate. Sometimes I feel like I get an extra diagnosis every time I get within 5 feet of a Dr!

alpaca yes, I had no signs/symptoms of Borderline PD (nor Pseudo Dementia, nor Psychotic Depression) prior to stopping all my meds. Stopping meds triggered major MH issues, I was admitted 2 times, threatened with Sections, 4 different times. Once I restarted meds dementia & psychosis went, BPD has remained.

Living I know - I see GP every 2 weeks and there is always a new diagnosis - I have a brain mri and spinal mri lined up and am waiting for results of a suspicious mole removed last week.

Anyone have any advice for PIP assessment on Friday? They are coming to my house. I sent more than 20 letters with my form!