Should I give up? am i just crazy

If my blood work I do tomorrow comes back negative should I continue to fight or just take it that im crazy

i have pain in all of my joints, no sign of swelling i dont think but have alot of popping , i get a weird numb feeling in arms and feet/ legs (almost like its asleep) i have swollen lymph nodes, rash on chest cheeks and across nose. also im extremely tired. i was diagnosed with raynods a few years ago. I had blood work done a few years ago and it was negative. I am to have lab work this friday but if the last test was negative wouldnt this one? i feel like nothing is really wrong with me from the tests last time, but im so sick of the pain.

17 Replies

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  • hi there I had all the blood test going all came back normal but my doctor said that was normal for this illness so don't think your crazy if so we all are

  • Do not give up i know its hard and u feal like hitting your head on wall in sear fruststration asked to b referd to a speshallist untill u get an anser good luck

  • Hi kkgirl

    I sincerely hope that you are feeling as well as you possibly can be today? I am so sorry to read that you have been suffering in this way and I sincerely hope that you can find some resolution and relief to your issues.

    I would implore you not to give up and discuss with your GP and / or consultant about exactly what is happening to you and how you are feeling.

    Please do not be offended but I have pasted the Samaritans phone number below, I have done this out of concern and friendship. It is always very therapeutic to talk to somebody about how we feel, so I implore you to do this if you ever feel like you have no hope.

    UK: 08457 90 90 90

    There are many members on the forum who can genuinely identify with what you are going through and they can be a massive help to you.

    I am also pasting a link to the fibroaction website for you to have a look at:

    fibroaction.org

    Please keep us all up to date with how you are getting on, and good luck my friend.

    Al my hopes and dreams for you.

    Ken x

  • Hi there kkgirl

    I'm sorry to hear your distress hunny but was wondering if you minded telling us what the blood tests are for so that we can relate to your problem a little easier?

    I notice from your profile that you usually write on the Lupus forum and what you describe sounds like you are waiting to hear for a Lupus diagnosis and have you possibly written on here by mistake?

    All that aside I am often asking myself the same question about whether to carry on pursuing a health issue if the tests keep coming back negative. It is easy to think what's the point? but the point is only you know if there's something really wrong happening so if there is something wrong it's only natural to pursue it :)

    I hope you get the answers that you are looking for and wish you wellness in your pursuit :)

    :) xxxsianxxx :)

  • Last Friday I went to the doctor and she thinks its lupus mostly. Or ra or some antibody problem. She said we cant put it as growing pain on the chalk board anymore. So thats a plus

  • How did it go?

  • I dont know yet. Have to wait for results

  • I realised that after I'd asked............ duh!

    dozy me :) are you alright?

  • Hiya,

    Has your doctor referred you to a Rheumatologist yet?

    If your blood tests are all negative then a lot of the symptoms you describe sound similar to the ones I experience with Fibromyalgia.

    I get swollen lymph nodes, rashes, numbness,pain, which all seem to be linked to the fibromyalgia.

    I would ask your doctor if you can be referred to a Rheumatologist. Xxx

  • I think we can all understand where you are coming from, for an ill person I am remarkably healthy and I can still remember the 'joy' when at long last one of my results showed something was wrong. I managed to get BUPA pay for me to have tests that were not on NHS. BUPA then decided that I must have had the condition before I signed up with them and cut my funding but that is another story.

    Keep positive, keep looking for answers and keep being the best you can be. Gentle hugs

  • do you suffer with a sore back and/or neck, and do they click and pop too?

    It may be worth seeing a rheumatologist if you don't already have one; sounds like Ankylosing spondilitis to me, but I'm no expert, I just know that's what I deal with too, and sometimes all the clicking and popping and "sticking" of joints can be really painful.

  • In addition to all the good advice above,

    NO you should not give up, and

    NO you are not crazy

    Though it can be hard to persevere at times, please keep going. :)

    You deserve some medical support as you clearly have something

  • Hi kkgirl my advice wood be stick at it. Before I was diagnosed I was going to and fro to the GP, having blood tests for this that and the other. In fact after 2 years of the pAin getting worse I came across a peice in a magazine about fibro and I mentioned it to the GP and he then refered me to a rhematolgist who then diagnosed me with it. Take care xx

  • I think the best advice given here is don't give up and ask to be referred to a rheumatologist.

    If you are thinking it may be a lupus thing, remember the ANA can come back negative and the next time positive, it is not always consistent. The best gauge for that is a good rheumatologist who can make a decision on a lupus checklist.

    Lupus and fibro often go hand in hand along with thyroid. You need to see someone who can look at the whole picture as these conditions often share the same symptoms.

    A photo of your facial rash would be a good thing to start with the rheumy.

    All Best Wishes

    Nancy

  • I just got my ESR back and the value was 1 and the std range is 0-20.. well i guess im fine. no swelling are anything.. in a way this is very frustrating im not going to lie!

  • Hi there please don't be disheartened it doesn't necessarily mean your fine it just means you're not showing signs of auto-immune disease at the moment. I've been going through this process myself for years as have most of us here I would imagine :)

    Bluebell99 gives you some sound advice regarding this!!

    Did your GP make any suggestions as to what else she thought may be wrong? and Have you discussed Fibromyalgia with your doctor?

    Ken gave you the link to our mother site where there is a wealth of information connected to Fibromyalgia fibromyalgia.org and please may I also point out the FAQ section on the right of your screen too. Most importantly I think talking to GP about it maybe a good idea if you think you fit the profile of this illness.

    Please don't be put off it took 20yrs for me to get a diagnosis and many others here too waited a long time. It can be a laborious, frustrating, distressing and anxious time please don't be afraid to ask any questions and please don't give up there's always someone listening here :)

    :) xxxsianxxx :)

  • Kgirl .sounds very much like the start of fms insist to yr doc that u want to see a rheumatologist and if u get that still emphasise to them u think it may be fms as the older docs who qualified before 1978 dont have the knoledge of this illness it took me to see 2 rheumatologists before I was diagnosed . Yr not crazy dont let them make u think u r ive had to fight all the way hope u get an answer soon gentle hugs .good luck

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