I have recently started getting pains in further joints. I have had trouble with my ankles for a while, which was put down to me being flat footed and have had pain in my wrists for a few years which I was told was tendinitis, which I have no problem accepting could be, and probably is still the case. However I have recently started getting pain in my knee, which is often accompanied by a burning sensation, and pains have started to occur in my elbows, my back (both lower and upper back, although never both at the same time) and even some pain in my shoulders. I also suffer from bad migrains which is currently under control by medication. I also sometimes get pains that feel like they're in my muscles, mainly my upper arms and legs. I have also had this twitch in my neck for a while, and have been getting pins and needles in my legs, arms and down my face (of which could be due to anxiety, which makes it difficult to know if I should mention this to the doctor if I see her.). I have also been feeling increasingly tired, even after enough sleep and increasingly finding it more and more difficult to concentrate, could these also be related to the pain?
Thank you for any responses,
Jade .
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KiwiMonkey
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From what you're telling us, I'd suggest you ask your GP for referral to rheumatology to be investigated for autoimmune conditions, specifically systemic lupus and sjogrens. Forgive me if you're already being investigated for these conditions, or been advised they're not relevant in your case
if poss, before you see your GP about this referral:
look online for a rheumatologist in your area who is experienced in these conditions - any old rheumatologist may not be experienced enough to be trustworthy (diagnosis is not based solely on blood tests. Medical History & physical examination are as important to an experienced clinician. I recommend you specify the rheumatologist you want referral to
also, take an hour or 2 to prep a list including all the parts or systems of your body: skin, ENT, head, mouth, spine, respiratory system, etc etc. Then beneath each body part or system , list any chronic symptoms that you've experience, their severity, persistence etc. Include everything from rashes to infections to ulcers to aches. This listing will be the foundation of the case you present to both your GP, and to rheumatology
If you'd feel like discussing this with other patients like me, the healthunlocked lupus uk forum here is full of good people happy to support others trying for diagnosis
Is it something that usually appears in normal blood tests? I've had blood tests and the only thing that came back abnormal where the liver function tests, for which I am waiting for an ultra sound. Or are they specific blood tests that are usually only used when certain conditions are suspected? I've never presented all of my symptoms together before, only one or two when they've arisen or become really bad, but it sounds like the first thing I should do is to go to the gp and list all of my symptoms rather than the ones that cause me most problems at the time.
yes some parts of normal blood tessts can cause a dr to suspect immune dysfunction (eg low whiteblood cells of any type), but there are special autoimmune blood tests which are carried out when there are suspicions. however MANY patients have autoimmune conditions even though they come up neg on autoimmune blood tests: this is why it's so important to see a rheumatologist who has enough experience of autoimmune patients to know how to look closely at your whole medical history and to carry out the right kind of physical examination.
prepping for a dr appt where you want to give your case for possible referral to rheumatology regarding potential autoimmune conditions:
before you go to any gp or dr etc, it is indeed best to sit down and list your whole life of symptoms, especially any recurring and/or persistent symptoms:
take an hour or 2 to prep a list including all the parts or systems of your body: skin, ENT, head, mouth, spine, respiratory system, etc etc. Then beneath each body part or system , list any chronic symptoms that you've experience, their recurrence rate, severity, persistence etc. Include everything from rashes to infections to ulcers to aches.
Such a listing can be the foundation of the case you present to both your GP, and to rheumatology regardless of the type of autoimmune condition you might have. I urge you not to worry about this: there is every chance you don't actually have something autoimmune going on, but, from what you've told us, I wonder if the chronic nature and multisystem character of your symptomatology could be indicating that it might probably be good to at least consider the possibility thoughtfully with both your GP and the right expert consultant. if you want to discuss this further, there are lots of good people on the healthunlocked lupus uk forum who could help. There are lots of people coming to the HU lupus uk forum without a firm autoimmune condition diagnosis...it's just that in my experience this particular forum gives good advice on how to go about preparing for autoimmune investigations.
I'm not an expert and have similar problems but the best advice from what you said is tell your doctor everything. Even if you don't think it's related or due to anxiety.
Have you had a referral to your local pain team? They specialise in this area and can help you understand what's happening and recommend medications to your GP
I've only ever had a referral to the physio, which was once for my ankles and once for my wrists. I'll go to my GP and say all the symptoms and see what she says .
Aren't those things usually tested for in normal blood tests? Because I've already had blood tests and the only thing that was abnormal was my liver function tests.
Many member's on Thyroid Uk know there is no such thing as 'Normal' Thyroid bloods, I believe B12 Deficiency patients have similar problems with Doctors saying their bloods are normal/Ok/Fine nothing wrong with you, yet you might still have all the well known symptoms pointing to Thyroid/B12D.
I and many others on Thyroid UK now ask for a print out of of our bloods and their ranges from their Doctor's surgery and post them up for other members to see if they actually have Low Thyroid/B12D or any other deficiencies that Doctors are well known for missing.
Doctors only check to see if your bloods are 'within range' or not, if your bloods are 'within range' they usually say you do not have a problem, yet many Thyroid/B12D patients learn that if your bloods are showing LOW 'within range' and have symptoms of Thyroid/B12D, they could well have a thyroid/B12D problem.
Europe and America have lowered their TSH thyroid bloods, but here in UK many are still being missed, who often end up with Fibromyalgia type symptoms.
You say you are tired and cannot concentrate, (called brain fog,) both are top symptoms of Thyroid/B12Deficiency.
Both Thyroid and B12D are easy treatable.
One American Doctor nearly died, he was later found to have B12 Deficiency, but because his B12 blood results were showing 'within range' his Doctor friends did not have a clue what was wrong with him.
He was in the 'grey area' 'within (the blood) range' which Doctors here in UK do not seem to acknowledge.
Great advice from Barnclown. Make a list of body parts, areas and list the issues you've been having. Taking this to the doctor will help ensure you pass on all the information to get the correct referal. We all have varying chronic conditions, but only a doctor /specialist is best placed to assess all the symptoms, establish which are related and which are resultant and make sure you see the correct specialist. Please see your GP, you've described a lot of symptoms that may well be something easily controlled but the not knowing is usually more stressful than to finally find out what's wrong.
I hope you have the help you need and feel better soon
I've never actually said to my doctor a whole list of symptoms, so there would be nothing to suggest that to her. I'll make sure that I say everything next time and see what she suggests,
My dr did blood work and said with out a doubt lupus gave me all the lupus meds I called back every month for 3 months to ask are you sure it's lupus every time he said yes and referred me to a rheumatologist took all my notes with me got there he basically told me to be quite he said I don't know you or what you have I have to do all my own blood work so come back in a month ( that app cost me 2,500) went back a month later he said all my blood is good did the tender spots test an I had all he then said fibromyalgia an he started taking me off all my lupus meds starting with the plaquinel (told me an my husband plaquinel =death) an I said well could all my blood be normal cause I'm not in a flair and I have all the meds in my system he just walked out the room the nurse came in I told her the same thing she thought I was crazy an said it's fibromyalgia come back the week after Christmas! I looked it all up and talked to a lot of people who have lupus and I have all the same systems an in more pain not that I'm going down on my doses of plaquinel! I don't know what to do now this is the only rheumatologist that will see someone with no insurance an he already told me there is no meds he can give me for fibromyalgia I said what about pain he said loose weight that's the only thing that I can tell you!! Anyone had this problem?
I saw thw doctor this week and she's sent me for blood tests again (which will probably come back normal as before) but she's done nothing about the joint pains at all and I find it very hard to explain everything to my doctor as I have massive anxiety anyways and the way she says things is confusing to me (she doesn't seem to understand people with aspergers very well) so increases my anxiety even more so I didn't even say all of it Will probably need to go back to her to talk about blood tests results so will try again then to explain everything. To be honest it's the tiredness that I really need sorting out as it's effecting my studies and I've already had to prospone 2 exams because of it, I can deal with the pain but the tiredness I really can't.
The problem is everything makes me feel anxious when it comes to appointments 😣 It would probably be easier to write things down. I just seem to have this fear that I'm just overaggegerating or something. My mum's always with me which helps because I tell her everything and hope that she will tell the doctor for me, she also has anxiety issues but not quite as bad as me and she's more used to doctors than I am.
A doctor would rather know everything, so that they can help you in the long run. If it's written down you might not have to explain it, they could start to piece stuff together. Having your mum with you is a great idea too! Hope you sort everything soon X
To be fair I wouldn't even get into the doctors office without my mum 😕 So its more essential for me to have her there than just a good idea 😜 It's the reason why I didn't register at the doctor sugery at my uni and stuck with the one at home. I'm going to have to tell her everything somehow, if its only to put my mind at rest that its nothing serious.
So I went back to the doctors with a list of all my symptoms and turns out it was literally a lack of communication that lead to my doctor not feeling like I was listening to her and I felt that she wasn't listening to me so nothing much got done. However with the list so she and I both knew that at least the majority of symptoms was written down she has referred me to a rheumatologist, so now I have to wait for that to come through. There was nothing on my blood test that would explain why I've been so severely tired.
I don't really know what to do now though as the tiredness is still severely effecting me . I can put up with the joint pains, as in general they are not so severe that they stop me doing things, except from my wrist which reduces the amount of time I can write for (luckily I get to use a PC in exams due to my aspergers, otherwise I would be screwed for the essays) but the tiredness is making it hard to do anything, ever known revise for my exams and actually take anything in. I'm applying for at least one of my three exams, and probably a second as I'm struggling getting through the revision needed for just one of the exams .
My 2nd semester looks horrible as well. I have so many days where I have basically nothing and then days where I have up to 8 hours of lectures, which literally means being in lectures all day from 9am to 6pm with only an hour break . I don't have a clue how I'm going to get through those days, I struggle to concentrate for even 1 hour sometimes, 2 hours severely pushes my limit and over that there's no chance :/ . This degree means so much to me and I feel that everything is working against me getting the highest mark possible . It's all increasing my anxiety, which I suffered from severely before any of this became an issue anyways, and is making it hard to go out as I'm too exhausted to do any work if I do go out, which is not good for my mental health . I'm just hoping that something's sorted out soon, as it's not getting any better and is getting worse as time goes on .
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Will probably need to go back to her to talk about blood tests results so will try again then to explain everything. To be honest it's the tiredness that I really need sorting out as it's effecting my studies and I've already had to prospone 2 exams because of it, I can deal with the pain but the tiredness I really can't.
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