feeling confused

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So I have had fibro for nearly 2 years now an my husband was talking to a nurse tonight who has had fibro 15 years an he was telling her about me an how bad I have been ie my legs have been swelling and my hands an fingers but I also get chronic pains in my knees to the point where I can't move an they swell terrible it feels like there is a vice around my knee also this past 2 weeks I have been suffering terrible with my feet I can't walk as they feel like they are badly bruised an my ankles hurt so bad also my shoulders feel like there ripping get from the sockets . I have been in bed for nearly a month with these horrible pains I am at my wits end. So any way this lady nurse said to my husband it doesn't sound like fibro it's snd like lupus am not sure what this is but she advised him I should got for the lupus blood test from gp. Does anybody else have any of these symptoms or has any information on lupus would be highly appreciated Thanks kirsty xxx

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  • Posted

    I agree with the nurse, see a rheumatologist and be tested. It can't hurt anything. I do not experience any swelling just pain. Anyone else experience visible signs?
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    • Posted

      Thank you I have seen a rheumatologist but she weren't very helpful to be honest either is my pain specialist. She told my husband to see my gp so I will try them first. If they can't help I have a appointment with my pain specialist coming up so see if he can help Thank you for your comment x
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    • Posted

      Hi boqer I am going to get investigated more as ppl I have spoke to this site an family members who have fibro dnt seem to get swelling either thanks for the reply x
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    • Posted

      Was firstly diagnoised with arthritis then it wasn't by a third consultant and told fribro I have  swellings of wrists fingers back knees and ankles. Seeking third opinion as lots of people on this site say it is not a symptom of fibromayalgia. 
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    • Posted

      I have had the symptoms for 3 years. Can I ask do your swellings go up and down or constant? It's very fustrating. Defo go back to your doctors and request to see another rheumatologist even if your bloods come back normal. As sometimes it can be seronegative which I was told I had. It seems when they aren't sure they just diagnoise fibro as an easy way out. If your symptoms don't fit with fibro point this out too and get them to explain them. 
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    • Posted

      Hi yes they do my hands swell 1st thing in the morning an it's hard to do anything till they go dwn my legs are swollen most of the time unless I have them up constantly but it differs some days are worse than others. I do agree it's very frustrating an also upsetting how we get passed around. How does yours effect you an what is ur swelling like. I am thinking about asking to see a Different rheumatologist an my pain specialist is no help either on my last appointment me I told him how bad I have been an explained all about the swelling How I am constantly out of breath an always wheezy his reply was well what do u think k we should do then ??? I was so annoyed an said we'll arnt you suppose to tell me that. My husband explained to him how I can't walk very far as the pain cripples me it's about 100 yards if I get there I can't get bak it's embarrassing an upsetting as I am only 37 nearly an was always active. Do u struggle with any breathing problems or walking difficulties x
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    • Posted

      Funnily you say that.. Mine all began with breathing problems in 2013 which I'm under a consultant for which they can't explain and have put it down to "difficult to control asthma' ( never had problems before) I am on steriods and have been since it happened a few months later I developed swelling and pain. My swelling never goes away. In constant pain and been told by a private consultant sero negative arthritis. Consultant at local hospital the same and then was refered to another consultant as was having problems with the drugs I was taking and now been told not arthritis but Fibro. 

      which I don't agree with so going to another hospital for a third opinion. 

      Have you had any blood tests Done? Was everything ruled out before they told you fibro? I would very much advise seeing a different consultant perhaps at a different hospital? I have lost total faith in all these doctors but finding a good one who is interested is key. I don't know much about fibro as Iv only recently been told I have the condition. There is a test for lupus and apparently 90% of people will test positive. Do you have a rash? It's so fustrating you go the NHS who are meant to help and support and half of them just have no clue!!!  Go to your GP with your points and push and push and don't take no as an answer for another referral. 

      In in regards to the walking I am the same. It's horrific I have a 5 year old and I can't do anything active with him and I'm only 25. My fingers are like sausages and swallon wrists I have so called bursitis on my knees and my back have a lump of sweelling at the top and ankles. 

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    • Posted

      Mine started due to a pregnancy I was carrying twins an 1 was in my tube an 1 normal I eventually missed carried both of them due to them removing the baby in the tube. After that I was in conic pain an had a temp so high I collapsed with the pain so hubby took me to hospital where they found some of the fetus was still inside me which caused me to have a pelvic infection possible spent another week in hospital and had to have a iv drip which was the strongest antibiotic they can give u it was supposed to go in my behind but none of them where trained to do it.

      I have been to 4 different hospitals over this an the stupidity I have heard out of the mouths is so ridiculous. 1 in the women's told me I was constipated when I was 13 weeks pregnant. Makes no sense to me how they got thee medical qualifications.

      I have appointment for next Wednesday am not leaving in till I have a test done. I have had loads of tests done an X rays cat scans mri scans stomach scans for my kidneys stomach an uterus also had tests done for my bladder an bowels n am still no better than when it started.

      The swelling on knees is constantly there looks like Ave got big weight lifter knees lol. But the pain is horrid isn't it my wrists are terrible few weeks ago I was making pasta an my hand gave in an I scolded myself was pretty bad so am banned from using the cooker nw.

      Omg ur only a spring chicken arnt u it must be hard with ur 5 yr old there so active arnt they my youngest is 11 he is computer a mad so he isn't hard to entertain my fingers are like sausages as well they go dwn a bit but they are still swollen a bit my husband laughs an says am like the michellein man ha ha... what is it bursitis am cue less to all this stuff. O no the lump must be uncomfortable for u. That's funny u sed that I have lumps under both of my ankles. O an ye I do get rashes on my face an on my chest .

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    • Posted

      Really sorry to hear the loss of your babies. Sounds like you have been through a lot. I can relate to your situation each doctors says different things and therefore your left feeling well who is right and who is wrong and left not knowing who to believe or trust. My GP and someone else on here said look up a rheumatologist who specialises in a condition you believe you have (lupus) and ask to be refered to them some hospitals have lupus centres.  Some of the bigger hospitals have more specialist consultants in certain areas. I have like fluid filled lumps coming out of the side of both my knees. This was my first physical appearance. Before the others started swelling.

      Put  your foot Down until you feel like your being taken seriously. I have been advised to write everything down. My next consultant I see I'm going to just give them paperwork of all my consultant letters and also all my symptoms and why you disagree with the current diagnoises. I feel when you see these consultants there so intimidating and you end up on egg shells and forget what you really want to say. 

      If iyou have rashes then this is one of the main symptoms of lupus! It's a mind field for us but I think these doctors too they only go by what they have read in a text book and don't really practice as everyone's symptoms are different and if they can't piece the puzzle together they blame it on something like fibro as there is no test that can accurtrly rule it out. I see it as there easy option out. 

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    • Posted

      Thank you I literally had tops 10 min with my rhumetologist an she quickly rushed a examination an because my mum as recently been diagnosed with fibromayilga they sed O yes that's what u have ill do some blood tests to rule anything else out but I heard no more from it. I am gone to demand I get tests done an also new rheumatologist.

      I have to take husband with me nw cos as u sed they make u forget or feel like ur walking on egg shells. My husband challenged my pain specialist I he did not like it he come bak with she will see the difference when the summer comes an all that heat we have had recently I was still the same. My husband mentioned my breathing problems he sed it due to the pain an when he sed about the swelling he dismissed that an sed we shall put u on pain management. When husband asked my wait gain an how I can't walk far his reply was a marathon runner doesn't decide to run a marathon in a day he trains for it ?????? He cud not give me a proper answer an he sed about the weight gain stop taking the pregabblin or lower ur dose I just dnt understand how this is supposed to help me I just feel like sometimes just given up an not going bak to them.

      I spoke to my doctor about my body retaining fluids an could that what it is with my legs an knees he sed am to young for that to happen.

      Yes I totally agree about the doctors my gp as told me am a mystery cos they cud the find what was wrong with me but yet when I spoke to another doctor at the same surgery he was disgusted in what she sed an the same week she sed it he admitted to hospital ad to get me a ambulance.

      I think I need to stand up for myself an tell them what care they have gave me has not helped me in any way. Can I ask if u have had any memory problems or speech problems by any chance

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  • Posted

    I'm not sure who diagnosed you with fibro but those aren't your typical fibro symptoms. As far as I know swelling isn't one of the symptoms. I would absolutely seek further testing. I wish you the best of luck!
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    • Posted

      It was my pain specialist an rheumatologist that diagnosed me after a year of being told I was a mystery my doctors as they couldn't find what was causing all my pains and other problems. I also have painful bladder syndrome but as far as am away you dnt swell up with that either. Thank you for your comment I will be asking for more tests to be done x
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    • Posted

      I'm sure your Dr could do a simple test to check this. I honestly feel as though Drs are just telling anyone with unexplained pain from head to toe it's Fibromyalgia. Not enough being done for people who have this. I have Fibromyalgia and Costochondritis and to be honest it's only recently my Dr is looking more into it especially the chest pain from Costochondritis.
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