bone,, muscle, nerve pain

[daisyd]

I have just found the energy to write this, not sure what what is wrong with me apart from a huge list of the medical history I already know about, the main things are that I have had problems Hughes syndrome since about 1981 have problems with my memory really bad I had to retire early anyway gradually over the last two years my lt leg has been giving me muscle pain with spasms getting worse now is centering round my groin, I can hardly walk

Tuesday I will hear from one of the major hospitals in the area, because my blood test showed my CRP was 70 something it should be less than 1.0 could be from major infection or inflammation on antibiotics but I think it must be inflammation, my Gp knows about it and has written me up for codeine 60mgs gabapentin and I can have paracetamol on top of that, which I do take

has anyone else had a CRP test and found out what is wrong, sorry about the long post

[MaryF Administrator]

We are all different, but what I found helped myself was A) doing private extensive tests for Thyroid and B12, vit D, Folate, Ferritin etc. B) I went gluten free years ago, and making sure my levels were good did and does help me with inflammation. It is tricky working out what is good and what is not in terms of levels. However your most recent NHS test results may show some useful information. MaryF

[WendyWoo50]

I was so sad to read your post and wish I could say something constructive. I just wanted to show u my support.

My pains and problems seem to be cyclical. I have experienced all you mention. In fact it’s a bit of a joke at home now. With such a variety of symptoms and locations for them. People ask “what’s causing that?”

With APS, Lupus, Sjogrens, Fibro, plus a genetic heart condition, 4 discs out and arthritis in my hips; it is difficult to identify what causes what symptom. In fact knowing wouldn’t really help. I feel 96 not 56 😂

I hope gabapentin helps (many say it helps them) I am not allowed it (due to my heart)

What helps me:

I found meditation helps (led ones are better as they keep my mind focused)

I also benefit from Reiki (it is an ancient Tibetan Healing and Self Development Technique that was rediscovered in the early 1900’s by Dr Usui in Japan) Reiki is a hands on treatment (no massage) and allows you the time and space to heal yourself After a session, I always sleep well and feel better the next day. That relief is fantastic and well worth it - we do need the rest bite when the pains are continuous don’t we?

I find massage helps too (but check first).

Keeping warm is also important if I am cold the pain is worse my son bought me a heated throw and I have that on my sofa for when I need it. I use it daily.

I try and keep moving and despite the pain I get up and move at least every hour if not half hour.

I take lots of pills so try to drink lots of water

I do hope I’ve said something useful

Good luck with your results and journey 💋 x

[lupus-support1 Administrator]

Sorry you are unwell. The C Reactive Protein, by itself, only measures inflammation in the body and cannot determine the problem. The C-reactive protein (CRP) test is a blood test that checks for infection or inflammation in the body. It is used to detect the severity of inflammation or whether you are responding to treatment. It does not show where the inflammation is in your body.

Sed rate, or erythrocyte sedimentation rate (ESR), is a blood test that can reveal inflammatory activity in your body. A sed rate test isn't a stand-alone diagnostic tool, but it can help your doctor diagnose or monitor the progress of an inflammatory disease.

Other blood tests and examinations are necessary to determine cause.

Wishing you a speedy recovery.

Ros

[daisyd]

thank you for your replied I had a video call with the immunologists today, they are going to give me more blood tests and go from there

He is going to write to my Gp for a referral to rheumatologist for my bone pain

Thank you for the advise about drinking more fluids I must admit that I am so good at swallowing pills now that I can take 6 with half a glass of water and I will look into the other things, unfortunately as soon as I turn the heating on he notices even though I can do it on my phone , so the blanket sounds good, feeling more positive today, thank you again

[KellyInTexas Administrator]

sorry to hear this daisy.

I’m going through something similar- but haven’t had blood work yet.

I just posted a photo trying to “crowd source “ here myself.

I can’t seem to get to my doctors- my GP is moving 8 hours away.

I switched several days ago to enoxaparin and I’m wondering if I need to be upped a bit on it.

Or- autoimmune Myositis? But I have none of the respiratory issues. ( or rashes.)

Just hard fevers at night.

I have a few markers that are associated with it. ( marker for muscle damage.)

I feel like my bone is going to break- or maybe it’s just the muscle attached to the shin- feels like it’s being ripped off. Ankle is going to split open… ( so dramatic!)