Advice around symptoms - Poss CFS/RA

[Dozymoo42]

Looking for some advice around some things that are currently happening to me health-wise.
When I look back this has been going on for a few years now but I’ve either ignored it or been more focused on my daughter who was herself experiencing extreme neurological symptoms.
I have been struggling for years with headaches every so often - the only way I can describe them is pressure headaches. I never thought anything about them just took painkillers and lied down til they went.

Fast forward to last year and I started having problems with my hands tingling and going numb again didn’t really think much at the time but looking back that’s when things started to get worse. My hands and feet are often really sore in morning (doc referred me to RA consultant) over the months other things started to happen to me pain in other joints , brain fog, dropping things . Sometimes I drag my right leg when I am trying to walk at a brisk pace like it’s trying to catch up is the only way I can describe it.
Everything peaked at Christmas with all the symptoms and really Intense fatigue struggling to get out of bed and walk etc I feel like I am 90 and I’m only 45!
Doctor has said they are leaning toward CFS which is what my daughter has been diagnosed with along with FND - I guess my questions are if any of you suffer with CFS does this sound similar? I’ve also started to have random leg spasms when I am lied in bed at night my right leg just lifts up off mattress and shakes for no reason no pain it just jerks.
Sorry for rambling just trying to get everything out I am so worried .

I've got ME (I hate the term CFS - not your fault, it's what the doctors tend to use), and while some of these symptoms sound familiar, others don't. Have you been checked for MS?

Hi thank you for your response!
No MS has not been mentioned to me , like I said we’ve been going through tests etc for my eldest for last few years but hers was extreme she was having periods of being paralysed and stuff - all tests for MS done and was clear . So I assumed MS would be a poss diagnosis if I was experiencing something along those lines but with mine not being so extreme I never even considered it.

I'm certainly not an expert, but the tingling extremities and weakness in your leg might suggest it.
That's not to say people with ME DON'T have those symptoms, but I'd ask for it to be checked out.

Thank you I have an appointment this week will mention it and see what they say

I was diagnosed with chronic fatigue several years ago and my symptoms were primarily extreme fatigue, aching muscles and brain fog.
Written down it looks nothing but I would never want to go back to how I felt and looked then. The fatigue was next level and even simple tasks like drying my hair took ages as I was incapable of holding the dryer for more than a few minutes at a time
Thankfully headaches were not something I ever suffered with and although I had lots of joint pain mainly in my wrists and ankles and all my limbs ached especially when I was lying in bed I never suffered with jerking or spasms or leg drag when I was walking. That said when I was at my worst I couldn’t have walked more than a very short distance without having to rest or rushed to keep up with others.
The possibility of an MS diagnosis sprung to my mind too when I saw your symptoms but just because I didn’t experience the same as you doesn’t mean that you are not suffering with CFS. I know from meeting others with the condition at clinic that it throws up all sorts of weird symptoms.
Do you suffer with Raynauds? I developed it at the same time I was suffering with chronic fatigue and it has never gone away. My fingers and toes tingle when the blood supply is returning to them.

No I’ve not suffered with Raynauds, I think the sheer number of different symptoms I have going on are what’s confusing me.
joint pain and brain fog started last year but we spent a few months thinking it was peri menopause but the stuff what went on at Christmas is what made doctor think of ME. Thankfully I am not that bad at min but back then it was like 2 weeks of being stuck in bed etc I realise other people have had it worse for long periods of time so this is also confusing me!
It’s good to hear other people’s stories though to get an understanding of differences.

Do you know what blood tests have been done and the results?

So they did bloods before they referred me to the CFS Clinic - to clear anything that usually would cause similar symptoms such as celiac,thyroid, low iron etc all come back fine. They tested my RA factor and said that came back normal but my CRP was raised - they referred me to the Rheumatologist to check me for RA due to joint pain in hands feet etc

Do you know the actual results - eg ferritin is marked ok at a very low level but optimum would be around 70, did they test for b12/folate?

Found my ferritin and thyroid one’s, B12 was 334 I think last time I had it done which was November

Added as images didn’t know they take longer apologies! Ferritin was 64 and thyroid 3.5

I have m e and f n d . I’ve had m e diagnosed since 2015 but probably had it since 1990s and fnd 2018 when I had a functional stroke lost walking and talking .
it sounds like f n d, the symptoms come in waves and differ, they also mimic other illnesses. this is not a mental illness it’s neurological where your brain software glitches and stops sending messages to your body areas. Get your doctor to refer you to a f n D neurologist specialist to do the Hover test.

look up dr John stone on you tube he is the uks leading f n d man.

look up neurosymptons f n d .

https://www.google.com/search?q=neurosymptoms+fnd+guide&ie=UTF-8&oe=UTF-8&hl=en-gb&client=safari

good luck . Rest rest rest don’t push yourself. Remember to pace .

Thank you for your advice lovely, I have been resting more I am usually a push through it type of gal but trying to change my ways!

Eldest daughter was diagnosed with FND last year after episodes of paralysis over 18 months on and off. So I am aware of the condition just with the symptoms not being extreme I didn’t link them. Will see how I go with the consultant this week and then go from there.

so glad I posted on here as it has given me some guidance as to questions I can ask as I felt all confused.

I have had RA practically all my life and your symptoms do not sound like my own experience with RA, though I know each person is different. Also, I have juvenile onset RA, formally diagnosed when I was a toddler but exhibiting symptoms pretty much since birth, so I am aware the symptoms may present differently to adult onset RA. Ido hope you get some answers soon. Wishing you the best.

Thank you lovely

Just wanted to drop a bit of an update on this thread as you have all been so lovely .

Had quite a few scans, nerve conduction tests etc done over the last few weeks. Thankfully I get private medical through work so I have been able to get things moving quickly with just a small excess to pay. Spoke with my consultant today and they have diagnosed me with ME and fibromyalgia. They are looking to start me on amytriptlyne and physio for the fibromyalgia and I basically need to educate myself on ME and adapt my lifestyle to reduce flares.
Am on a little bit of info overload at the minute so I am going to take the weekend to digest it and hopefully can start to work out what’s best for me from now on.

There's lots of us here who can answer questions, when you have them. xx

Thank you so much that’s very kind of you xx