severe fatigue and muscle pain any ideas

L1985

hi everyone

brief history not got a firm diagnosis yet but rhuemy thinks I have connectives tissue disease with lupus characteristics. I have a positive Ana but all other lupus bloods are neg....I also have graves disease.

I have been taking plaqunil and azathrioprine and apart from white blood count dropping twice I have had no trouble on it and my joint pain, mouth ulcers, rashes and headaches are a lot better so its doing something. I was told before Christmas 1blood test showed enlarged red blood cells and I need further bloods to check for anemia.

last sat I started with severe fatigue so much so blinking my eyes was an effort, chest pain and muscle pain in the tops of my arms and legs. I went to a&e I felt so Ill but everything was normal and bloods only showed slight low white blood count....again be down to medication.

I rang my rhuemy nurse on Monday and had further bloods done checking ck levels and thyroid levels all came back normal. I have done literally nothing all week but sit in a chair and my muscles still hurt. if I try and do anything then I'm in so much pain.

I have also been waking in the night with pins and needles in my hand and foot and also having strange pressure behind one eye. I can see OK but feels like something is forcing my eye forward....I no that sounds strange! also I'm forgetting everything.

has anyone had anything similar and any ideas what could be causing the muscle pain. I have 2small children and need to b able to move about without this pain.

thanks

Lulu xxx

barbara12

Hi lulu
I am so sorry you are suffering like this, and with two children, gosh I find it hard looking after myself, well with the help of hubby.
Sorry I cant help, I have OA but I do get extreme tiredness..I have been known to fall asleep in the taxi .
I do your rheumy can come up with some answers for you.
Take care x

stickywicket

It sounds horrible, Lulu, and I can't relate to it at all. If all is OK on the rheumatology front maybe your GP could help.

L1985

Thanks for the replies.

I spoke to my GP 4 times last week and they told me to speak to rhumey nurse and she said bloods were ok would see me in march. Hate been left in this limbo im starting to think that the doctors cant do anything and just got to put up with it.

xxx

wall1409

Trust me my bloods were positive then negative, up and down, they need to do more tests, xray and mri, something may show up on that as I was originally diagnosed with OA of the spine with disc bulge but my condition has now totally changed...

Wendy

stickywicket

Are you taking any other meds? Pain relief?

maria09

My GP doesnt take just my blood results into account he goes by how im suffering at the time
I have OA & Inflammatory Arthritis even though my bloods are with in range
Have you asked the rheumy nurse if you can have an earlier appointment with her or your rheumy?
I contacted my nurse & she managed to get me in earlier its worth a try
Maria

dreamdaisy

Hello L1985, that does sound bad indeed. Fibromyalgia springs to my mind but I am not a doctor. Severe fatigue is something that troubles many of us on here but the muscle pain is reminiscent of fibro (based on what I have read on here from those who have it). It could also be that whatever form of inflammatory condition you have is flaring, that can also cause fatigue and pain. I hope you are feeling better today. DD

kentishlady

Hello Lulu. Am sorry to hear you are having such a tough time and hope you are feeling just a little better today. With small children to cope with it is not easy for you and my heart goes out to you. As an OA sufferer, now retired and on my own, I do have the 'advantage' of being able to do as little or as much at home as I feel able to do but with little ones, that is not an option as I can well remember.

I do hope you will be able to get an earlier appointment. Lots of us seem to suffer with extreme fatigue, I know I do, but it seems to be part and parcel of suffering with arthritis. Take care and look after yourself. Beryl

L1985

HI everyone

Thanks for the replies. Im yet to find a painkilller that works :roll: I cant take any anti-inflammatory at the moment as im having a colonoscopy next week and rhuemy docs didnt want the tablets to effect the test which is fair enough.

My rhuemy nurse mentioned Fibromyalgia but she said she didnt think it was that as people have trouble sleeping with it and im the other way at the moment where I could hibernate! also I read with Fibromyalgia that you feel all over pain where as I dont its tops of arms and legs so dont know if its possible to have the pain in just these places?

I thought it was my thyroid doing it but my levels are normal now.

lulu xxx

stickywicket

I hope the colonoscopy goes well and the results are good.

ShulaArcher

Hi Lulu

Sorry to read of all your problems. Are you keeping a diary of your symptoms? I think this would be a good idea so that your GP and any other health care professional is in no doubt how you're affected.

I suffer from fibromyalgia myself and was diagnosed by my Rheumatologist. The main symptoms are indeed pain, tiredness and sleep disturbance.

Hope all works out for you sooner rather than later.

Shula

L1985

thanks stickywicket sounds funny but im hoping they find something as it might explain my arthritis. My brother has crohns and dad has colitis so wouldnt be such a shock if I was part of that gang too!

Shula - Yes I have been keeping a list of symptoms and taking photos of rashes etc they just say I have alittle bit of alot of things and at the moment its not progressing into anything.

My muscle pains seem to have eased today and feel more like me in myself. I havent done anything for over a week so be interesting to see if they return when I start to move about more.

xxx

maria09

Hi Lulu,
Im no expert but from my past experience it could be Inflammatory Arthrits
My Inflammatory markers were only slightly raised everything else normal & as far as I knew no one in my family had Inflammatory bowel disease until July my daughter was seriously ill and finally diagnosed with Ulcerative Collitis also found my oldest cousin also had Ulcerative Collitis.
I also suffer from severe fatigue & muscle pains everywhere even my chest muscles.Which my Rheumy says its all part of my condition
i do think March is a long time away could you contact your Rheumy Consultants secretary tosee if you can get an earlier appointment or a cancellation appointment
Try & keep strong
Maria

L1985

HI maria

The Rhuemy has mentioned Inflammatory Arthritis before. i also get the chest pain I bought non-wired bras to help as it was so painful. Nothing worse when your chest hurts as every breath hurts and its not a joint you can rest!

Yes im going to try get an early appointment. I seem to have so many appointments to attend at the moment im starting to get that overwhelmed feeling. This time next week then things should have died down on the appointment side of things.

xxxx

maria09

Hi Lulu
I hope all your appointments go well Ive got everyone over nxt couple of weeks My GP, Orthopaedic Consultant, GP Practice for bloods, Rheumy nurse & did have to go see my evil boss & HR but dont now thank goodness
My calendars full :!:
I even write down what they have said and any questions I need to ask otherwise I forget
True abt the chest pain mine gets worse when I am stressed
Let us know how your appointments go
Maria

countyfan

Hi L1985,

I have Fibromyalgia as well as osteoarthritis of most joints. The pain you describe doesn't really sound like FM, as it depends on certain trigger/tender points. You say that you have had positive results from some of your blood tests too and although my RF was slightly raised (and initially the Rheumy thought that my swollen joints could have been due to RA) after further investigation and scans they decided it was all down to the OA!
I think you should keep on pushing for a definite diagnosis-FM is usually the final resort that people have to push to get diagnosed-although in the end I saw a different Rheumatologist at my second appointment and she diagnosed it straight away! (I'd never heard of it before-altho my boss accused me of reading up about it on the internet and making up my symptoms!!As if anyone who didn't have a disease would want to pretend they had)
Anyway, hope you get a definite answer soon x :roll:

L1985

Hi everyone

Well after things feeling alot better I went back to doing my normal routine ...school run, tidying house, looking after kids etc and yesterday I was back to feeling how I was 2 weeks ago really upsetting.

Maria - hope your appointments have all gone ok. I have two of mine ticked off just monday, tuesday and two weeks on wed then appointments have died down again. I have to make notes too especially as one doctor tells you one thing then another comes along and tells you something totally different! ...pet hate of mine.

countyfan - The things I hear that other people say really surprise me. Why would anyone want to 'invent' an illness makes me sad that thats how people think. Arthritis is an isolating condition as it is without someone saying something so insensitive and making us feel even worse.

lizzy100

u dont get muscl pain with arthritis. could be fibromyalgia?

suzygirl

I have SLE amongst other things. The fatigue you describe sounds like a lupus flare. The muscle groups you mention hurting are where I get severe muscle weakness, but I don't get pain.

You need to get as much rest as possible and avoid all non essential chores. It is common for lupus bloods to be 'normal' and unremarkable. A good doc will treat the symptoms as well as looking at bloods.

Persevere you will get there, you are doing all the right things.

L1985

HI Suzygirl

The rhumeys have said they think I have connective tissue disease with lupus characteristics. How long did it take for you to be diagnosed with Lupus? I am getting weakness as well and also waking up with severe pins and needles in my hands and feet.

I just want some answers. The colonoscopy I had for the stomach pains didnt show crohns or colitis which is good but also doesnt tell me whats causing the stomach pain.

xxx