Is diagnosis worthwhile? (CFS)

[mirandaspanda]

I don't know where to start. It's not going to be brief. A few years ago I had a major depressive episode resulting in 5 months of work and a diagnosis of unusual unipolar depression. I managed to see a private psych and ended up on a very low dose drug that is not common for depression having spent months trying the usual channels. Went back to work and did very well for a period.
Then I became exhausted and kept getting ill repeatedly with low level things. After 9 months of this, the GP ran lots of blood tests. These picked up that I was severely vitamin D deficient and my hormones were very low. (No periods for over a year.) I also had severe hand and foot swelling in the morning and pain in lots of places. The blood tests said it wasn't arthritis or lupus. GP said it was probably CFS.
I paid for a private gynae and started HRT. I also have severe bowel problems and paid privately to see another specialist - it's a close run thing but so far I am managing - next step would be a bowel re-section and he doesn't want that at my age.
All of this was against a backdrop that I lost a lot of weight. I needed to at the start - I was about 16 stone. By the end of the depression I was 8 stone. So again I tried to put the symptoms down to weight loss.
I had to reduce my hours last year due to medication changes and the tiredness. I am back up on full hours and have been kidding myself saying I'm ok. The trouble is I can be for a few weeks but then it crashes again. The last 4 months have brought more exhaustion, more swollen hands and feet, more pain.
But I can't stop. I need to work, look after the children etc. I am going back to the GP for a medication review, I don't even know if I have the energy to discuss this again. If it is CFS - I can't see how a diagnosis would change anything - there's no medication, no cure. And, I think all I can do is keep going. I try to be kind to myself, I exercise and I've worked hard on eating.
I feel rather large now - I've put on the best part of 2 stone and am a solid size 10 at 5'10. I thought I'd have more energy being a healthy weight for 9 months but it's not materialised. I simply don't have the funds or energy for more private appointments. And I don't know where to turn. Perhaps this is now me, I am getting older now (over 40) but I feel ancient.

I was going to visit my GP for similar on Monday but was going for either fibromyalgia or ME due to my symptoms.

I’ve suffered from anxiety and depression since being a teen, have IBS (although it’s not as bad as it was now in know what it is) however my whole abdomen hurts when touched. My whole body ache and hurts when touched main areas are knees, abdomen, breasts, neck, back and shoulders. I get numb tingling hands, my head and face hurts when touched, and I find it hard to concentrate and recall information. I can literally sleep for 24/48 hours after working long shifts 3 x 12.5 hours.

My symptoms have got worse since having cancer a few years ago, and I feel like I’m just existing and not really able to get on top of my anxiety or depression one knock back sets me off down the deep blank hole.

I’ve been back and forth to the gp but they blame it on depression, however although I do agree I’m thinking it’s more fibromyalgia or ME. I know there’s nothing that can be done but was thinking if at least I get a label reasonable adjustments will have to be put in place at work to help me cope. Even typing this out has made my fingers hurt 😔

I’m early 40s and feel ancient too!

Thank you for your reply chickhonhoneybabe I'm sorry that you're suffering. I do understand that depression kind of complicates the issue but a girl from work explained it really well. She was diagnosed with CFS at school and said, the thing that made her most angry was they kept trying to explain away the symptoms as depression, but "it's normal to feel really down when you're so exhausted you can't enjoy your life and do all the other things you usually do."
Do let me know how you get on. My appointment isn't until October but I'm not sure I'll last that long in this much pain. I can't even stand up first thing in the morning or bend my fingers.
I am sure you're not meant to feel this old in your 40s!

Sorry you’re suffering too. Can you get an earlier GP appointment?

I'd ask for a referral to a rheumatologist, op. CFS, ME, fibromyalgia all come under their remit and it's better to have access to a specialist than a GP if it is any of these things - which it might not be . There are other things such as palindromic rheumatism that present with symptoms similar to CFS/fibro etc.

I have fibro and swollen hands {palms especially} and soles of feet are
some of the symptoms I have.

Have you have your thyroid checked btw, op?

Thankyou SugarandVinegar Referral had been ruled out by my GP on the grounds of my blood test for rheumatoid factor being negative but it wasn't taken when my joints were swollen. I had never heard of palindromic rheumatism - I might mention to GP along with up to date photos - I have loads on my phone from the various points when my joints go bonkers. Oddly this week it started with a low level temperature and swollen joints one morning.
I have my thyroid checked every 3 months. It's always normal.

OP you need to see a rheumatologist who will investigate much further than a GP can. Your symptoms say autoimmune disorder. Test for parvovirus too! Lupus is difficult to diagnose and truthfully, autoimmune disorder diagnoses are beyond the GP’s scope- with all due respect to our incredibly knowledgable, hard-working GPs.

You say you have thyroid checked every 3 months - why is this? Are you hypothyroid?

Actually its been 6 months now. Every time I see the GP she wants to recheck my thyroid but it's always been normal (as in 0.70 ish) Never had an abnormal test and I have no idea why they keep testing it.
I am very sensitive to the cold - I do have raynauds . I also have some odd skin issues.
I don't think is autoimmune as I was anti-nucleur negative.

Being RF negative only rules out rheumatoid arthritis. There are other inflammatory arthritis conditions that your symptoms could be suggestive of. Psoriatic arthritis for example can affect hands and feet, cause stiffness and swelling in the morning, cause fatigue but often doesn’t cause raised inflammatory markers or positive RF or ANA tests.

Raynauds is an autoimmune condition so you have a greater chance of having other autoimmune conditions.

A rheumatologist would be able to rule out various conditions which may then leave you with a fibromyalgia diagnosis but please push for a referral as you need the specialist advise and some GPs won’t look beyond a negative RF or low CRP.

TSH (and free t4) aren't the complete picture and you can be hypothyroid with one of the other non commonly tested for labs i.e. free T3, reverse T3, antibodies. I'd have them checked too.

Did they test your cortisol?

Exactly which hormones did they test and what were the results?

I don't know about tS3 etc - GP will not test unless there is an issue with TSH!
I don't think cortisol has been tested. My oestrogen was so low that I am on HRT patches. However, I am trying to given them as I have now put on so much weight that periods should come back. I do have pcos but my testosterone was also exceptionally low.
I have managed to get an appointment with a rheumatologist so I'll see what happens there. I'm more scared of no progress than anything else.

Thank you lovely people for all your help. The rheumatologist thinks its psoriatic arthritis. Bit of a shock. He wants me to take methotrexate. I'm not sure - I am exposed to so many germs all the time it worries me. I'm wondering how long I can cope with the pain for!