Feeling so low with chronic pain and fatigue

[Bluewavescrashing]

Every single day, almost every waking minute I have nagging, aching, burning gnawing pain, mainly in my ankles, knees, fingers and around my rib cage. Constant tingling and itching all over. Pins and needles in my head. My fatigue has improved somewhat since I stopped working but I still can't manage to go out for more than a couple of hours in the day, have awful brain fog, can't contemplate going out in the evening.

My mental health today is pretty bad. I feel useless not going to work. I screamed at the kids this morning whilst they were dawdling around not getting ready for school. I feel meh about Christmas. I haven't made any friends at the school gate as I can't face the 'what do you do' conversation. I feel boring. I miss my hobbies and work friends.

I saw a neurology specialist and am having an MRI in the next few days. This is good as it will rule out MS if there are no lesions.

I very lucky in lots of ways but not feeling it today. Just want to go back to feeling normal. Stupid symptoms are hard to prove and vague. Blood tests are all normal but I feel unwell all the time. Bleurgh.

[Chronicallymothering]

I'm so sorry, I don't have any answers for you. I just wanted you to know that it's ok that it feels hopeless now, but it can and will get better. I've been sick 4.5 years, and I'm not better (I never will be) but my life is bearable. It wasn't in the beginning, it felt like a complete nightmare. I hear your pain. Please find some real life support, it's the only thing that helped.

[Bluewavescrashing]

Thank you for replying. I was diagnosed with ME but I'm not sure it is. People see I can now walk a short distance and congratulate me on getting better, but I don't really feel that much better. I find the DCs exhausting and just want to be left alone.

I used to love shopping, now I can't wear nice clothes as I'm so uncomfortable. I don't feel interested in much. I used to go to the gym, do other, active hobbies but can't anymore. When I see friends there's nothing to talk about.

I'm on antidepressants anyway and will continue to take them. Maybe will get some vit D tablets too. The fatigue service tells me to meditate, I do it but it doesn't really help.

[Bluewavescrashing]

@Chronicallymothering can I ask if you have a diagnosed condition?

Sometimes I wonder if it's my fault or it's just in my head. I can feel pain in my feet and knees right now. It is real. I'm ok pottering around the house but any real activity or stress wipes me out.

I'm a teacher and could not face the noise and performance of being in the classroom. But miss it terribly.

[MidnightMystery]

I've experienced similar symptoms and found to be vitamin D deficient and diagnosed lupus x

[Bluewavescrashing]

Hi @MidnightMystery my neurologist looked at my blood results and was confident there are no deficiencies, I will start taking vit D as a precaution though. What dose do you take and with anything else?

[Bluewavescrashing]

A hot bath has helped a bit this evening. It temporarily made the itching worse but soothed the pain.

I'm cooking an easy roast (turkey crown in a tray, oven toasties, frozen veg) for some comfort. Kids are having baths and chilling in front of the TV while I rest.

Thank you for listening.

[Dodie66]

Sounds like me and I have fibromyalgia. Aches and pains which change to different parts of the body. Every day I get a horrible fluey headache and some days get migraines as well_ sore tired eyes , neck pain. iBS and various other symptoms. You need to see a rheumatologist and they will do specifics tests on pressure points etc

[Bluewavescrashing]

@Dodie66 thanks, it could well be fibromyalgia. I'll ask for a referral when I see my GP. I don't find that painkillers help much but heat is quite effective. Hot water bottle tonight ❤️

[Dodie66]

Heat and steam is good for fibro. I always feel better after a bath. I agree about painkillers. They don’t help much. Brain fog is part of fibro too. Try pacing yourself. Have you seen the spoon theory?
Read this article arizonapain.com/fibromyalgia-spoon-theory-explains-patients-ration-energy/

[Chronicallymothering]

Hi, yes I have a wide variety of diagnoses(!) Fibromyalgia and Hypermobile Ehlers Danlos syndrome with a couple of neuro things too. Making sure vitamin D, B12, folate and iron levels (ferritin) are as good as they can be helps with fatigue. It's a process.

[inkworks273]

Hi @Bluewavescrashing I was wondering if you every got to the bottom of this? I’m having similar symptoms of brain fog, pain and tingling all over. I’m so worried I have ms.

[mangoandraspberries]

Ah OP I really feel for you, I’m glad the evening was better.

I used to have similar symptoms (gnawing chest pain, tingling in arms, knees so sore I couldn’t walk, brain fog). I was off work for over a year as I was so tired and breathless I could hardly get out of bed. I thankfully got better very gradually, although it took about 4 years to get properly back to work. I still have bad days when my chest pain returns and I can’t do my old job as I just don’t have the brain power anymore. But it is at least manageable now as long as I’m careful with what I do.

Everyone is different, but for me, stress is definitely a trigger, so I have made fairly big changes to stay well (ish) - less well paid job, less socialising etc. I don’t think I’ll ever be back to normal, but at least i can control it now to a certain extent.

I have been hoping recently that all the talk about long Covid (which has vaguely similar symptoms), will mean that people start to take CFS more seriously - I found most GPs and doctors utterly useless I’m afraid and ended up relying largely on complementary therapies (no idea if any of them really worked).

[mangoandraspberries]

Just reading the rest of your comments - it is definitely not in your head. Some doctors try to imply that, simply because they don’t know what it is/how to fix it. Utterly criminal in my view - I met a few like that. I even met one doctor who asked me whether I had exams etc at work that I was trying to avoid (this was after I hobbled into his office and practically blacked out on the seat as it was my first time out of bed in about 3 weeks, I was 26). I wanted to scream.

I hope you have more supportive medical people around you - if you don’t, please keep pushing and try to find someone more helpful.