Hi everyone thank you for reading my post. Am finding it’s getting more difficult to get blood from my veins and the blood looks lumpy not like it was years ago. Is that an age thing. I am just out of hospital and the surgeon found it so hard to get a cannula in my arm he forced it in after 3 failed attempts and I screamed as it was so painful. He said I had small veins. The nurses took blood it took many attempts I don’t understand what’s wrong with me. I have other symptoms too such as when I eat within minutes I feel unwell, dizzy, nauseous and I suddenly have a high temperature. I am struggling to maintain a normal body heat and when I came round after the anescetic I had about 6 blankets on with a machine to keep me warm and raise my temperature. I can go the other way and be too warm. The nurse said it was a reaction to the op and whatever drugs they gave me. I am super sensitive to everything and am currently on the lupus medication. I feel so unwell 24/7. Have been told I had bleeds on the brain and am waiting to see my dr on Thursday to ask for a referral to a neurologist and a expert in vascular diseases just so I can get some answers. I feel I am going insane. It’s symptoms after symptoms and I am beginning to think there’s a few more conditions I have that are going undiagnosed. Anyone have any advice. Thank you. 😀
Problems with getting blood from my veins any rea... - LUPUS UK
Problems with getting blood from my veins any reasons why. is it lupus or something else.
Dear Jeromicus888, you have/are going through so much, and I sense you are very overwhelmed. I am not going to add to that feeling of being overwhelmed, none of us here are qualified medics, so we cannot give you definitive yes or no on whether what you are going through is Lupus. I can however, empathise with you greatly, we at some stage have all been where you are, and it is exhausting and frustrating.
I will ask you this however, have you ever been tested for Anticardiolipin antibodies? also known as Hughes Syndrome, Sticky Blood, link below shows what areas of the body can be affected, and how. I would be asking my medics to test me for this, of only as a rule out exercise.
Also link to the excellent Lupus UK guides.
ghic.world/hughes-syndrome/...
My advice would be this, take a step back for a day or two, start to make a diary of symptoms, take photo's of any visible body changes, i.e. rashes, swelling. And then ask for referral to an appropriate consultant speciality.
Take care, and good luck.
Hi thank you for taking the time to reply. I haven’t had the test but I will be asking for it as it could be a possibility as I fit the symptoms. Yes I think a 24/7 diary is the next step. I have so many symptoms and I am all over the place. Will speak to my gp about further tests and will let everyone know when I can get to the bottom of what’s wrong with me. I wish you all the best. 😀
Dehydration can cause dizziness and difficulty getting blood from veins.
Thank you for taking time out to reply and I appreciate your advice. It seems I am always dehydrated yet I drink lots of water. Maybe I need more. But on the morning of the test I hadn’t drink anything for a few hours so that explains a lot. Thank you that is good idea. I will drink more fluids to see how it help me. Have a great day. 😀
If you are drinking diuretic drinks, caffeine is a diuretic, they will cause you to pass more fluids. Some drugs are also diuretic. Eating more fluid containing foods can also be useful.
But yes I try to remember to drink plenty of water over the 24 hours before any clinic consult that may lead to bloods being taken. It generally makes it less painful.
Thanks for that as I drink
Lots of coffee will cut it out and see will how I go. Have a great day. Cheers. 😀
Before my infusions I have to drink for 24 hours ....they say 2 -8 ounces of liquid, but I do overs 64 ounces and often 30 ounces the morning I have my infusion.
Last week, I didn't drink as much because I was on a hectic schedule, and while the blood was bursting in every vein. It took six times before they could find a vein that would work.
Here are the things that help me since I have been getting monthly infusions for the past seven years.
- take a "hot bath" before you go for infusion, or blood drawn, to get the blood flowing in your body.
- drink 64 ounces over a 24-hour period of hydrating liquid, not coffee or tea.
- if your body is cold when you get there, get the nurse to fill a surgical GLOVE Full of "hot water" tie it off at the top and "hold it over your hand" where they are trying to draw the blood for a few minutes to open the vein so the blood will flow. ( usually those rooms are so cold, anybody's veins will close up 🙃)
I do this monthly, I have a lot of practice .....blown veins are no fun, and veins that roll are no fun, so I work diligently to make sure I'm helping them out the best I can 💜
- pediatric needles - 👶 So much better for us
Thank you for your advice. Yes the room was cold and I have reynauds i didn’t realise about the heat and hydration. Yes it’s strange I have to drink gallons of water constantly as I constantly feel thirsty and dry. I might just mention that to the Drs. Hoping it goes better next time as am in for another operation soon. It must just be that some people have better veins but at least now I know what to do after your advice. Thanks again and have a great day.
Also I asked for a blanket while I'm getting my infusions, but if you're just giving blood, they don't usually give us blankets 🙁 We're not there long enough ☺️
i feel the same. i have had abnormal blood tests with a note on the bottom saying see doctor. made an appointment and nothing to worry about. i find this very strange. xx
Never take what the Drs say as the truth. They don’t want to worry or panic their patients and I have personally found they withhold vital information. Had a brain scan 2 years ago was told that the scan shown no problems or any any signs at all then had another one last November only to be told the same. I then go to the memory clinic only to be told both those scans shown I have had micro bleeds on the brain. I looked it up and there were many reasons why I have had those bleeds. You need your medical records. I got mine and found out all sorts of things that they kept from me. I was livid. Am so sorry your being kept in the dark especially when you need to know. I hope you can get your results it’s worth it’s weight in gold. Let me know how you go on.
Thankyou. xx
i forgot to say that when i go for blood tests, nurses struggle getting blood out of me. no chance getting any out of left arm and a struggle in the right arm. took 2 nurses last time. nightmare so i wait till the afternoon to go so i don't hold people up. i suffer with severe dry mouth too. doesn't matter what or how much i drink, sprays etc do nothing. so miserable. i grind my teeth awful at nights and have done for years. xx
Omg dry mouth do you have Sjögrens. It’s what I may have. Look it up lass if your symptoms are similar they will have to do the blood tests. The problem is mostly everyone on this site are having a terrible time. Drs withholding vital information, specialists who are useless or getting anyone to take you seriously just to make what we all have to deal with. Get onto the internet. I only found out about most medical stuff from this site and doing research online. Before your next blood tests drink lots of water they can get the bloods more easily. Have a great day. 😀
i make sure i drink plenty of water and yes i am on mycophenolate for sjogrens. i have looked all results up on internet and they aren't good. people say i shouldn't jeep googling stuff but i am addicted and want to know about things. it just seemed strange going to g.p. and told all ok but in my blood test results it said abnormal, see doctor. xx
Your just like me. I am never off de google. You have to be your own gp nowadays. Get a print out of your blood tests then go online and check everything they have tested you for. You can find out what’s within the normal range and why it’s presenting as abnormal. They should explain it all in detail to you as you have a right to know. No wonder we have to google everything never mind we will get there in the end. 😀
Started a new post on this. I Google all the time as it is the only way to handle a lot of situations.
I hate being told not to Google. It is more about being discerning and by discussing things here we get other people's views.
Maybe some people do not have the background to understand what they read and have a great team of the doctors so it is not necessary.
I understand the stuff and need to share what I understand with those who treat me. They are not saying don't go to the Internet, in fact they are probably glad that I'm informed.
Hi, my veins are really bad especially when they try to get a cannula in. I was told to drink loads and found that keeping my hands warm helped. I always had hand warmers in my gloves when I went to the hospital. The ward I was in eventually had a great little machine which was like an old fashioned hair dryer, you put your whole arm in a plastic sleeve and they turned it on. Bag heated arm and made veins nice and plump. What a simple but very effective piece of equipment. It certainly helped me.
that's Brill. never been asked to use one of those when i have had to go for blood tests. xx
I hope that idea catches on at other hospitals
Hi will definitely see if they can get one for me as am back in for another operation soon. Thanks for the advice. Have a great evening and thanks again. 😀
Think it’s mainly used for cannulas but it was great, made a big difference to me.
Hot Wheat-bags (available from Amazon & Superdrug) are good, pop in microwave for 90 secs and place on arm to get the arm warm, also keep the water content up. I always drink plenty hours before I have my monthly bloods done cos my veins are very thin. I was told a few years ago to make sure they use a very small needle, makes a big difference.
Hi thank you for taking time to reply to me. I will definitely be asking for a smaller needle as the surgeon forcibly pushed in a bigger needle. My hands
I had exactly this experience as an inpatient a few years ago when in hospital with post op wound sepsis. I screamed too but the duty dr ignored me! In the end I went to the nurses once my iv antibiotic had been administered and said if they didn’t remove it straight away I’d do it myself. I’ve still got the scar!
I often present as dehydrated in my bloods and they can’t get enough from my veins. I drink loads but it just comes out the other end! I have Sjögren’s as my main disease.
Omg that’s awful what you went through. Is the constant dehydration a symptom of Sjögrens as I feel it’s something I may have. Have to ask my rheumatologist as it looks like I am constantly dehydrated but I make myself drink lots of water or juice as I have high levels of protein in my urine and my kidneys always hurt. My skins always dry and I am always thirsty. It must be so hard as anyone with an auto immune disease has so much to deal with. I couldn’t understand why the surgeons just didn’t get a smaller needle for my small veins and yours too. My next operation is for a bladder and bowel prolapse which is in a few months time so I will insist on a small needle and I will drink gallons of water. I must look up Sjögrens in more depth. Thank you so much for your reply. Have a great day. 😀
Oh you poor thing with prolapses etc. It might be worth looking up hypermobility Ehlers Danlos Syndrome as this affects quite a few people with rheumatic diseases and can cause prolapses etc. I don’t know if our kind of dehydration is officially regarded as Sjögren’s related - I don’t think so. But in myself I’m sure it must be for some of us. I have very high plasma viscosity, elevated RBCs and often get protein in my pee and raised Creatinine and all apart from RBCs are associated with Sjögren’s. It makes sense if we are dry to the bones that we would be doesn’t it?
Small vessel disease (brain) can definitely be Sjögren’s related - it is for me and the rheumatologist who diagnosed me by lip biopsy told me this. X
X
Thank you so very much for the information so I can now speak to my rheumatologist about further testing. I was very interested in the comments about the brain as I have just found out I have micro bleeds on the brain. I will definitely look up everything you have mentioned as I feel I have other undiagnosed illnesses. I was told by my gp I have hyper joint mobility issues with the wrist and fingers. Thank heavens for this site and the people on it who know so much more than me. Thank you. I will update you once I get more information. My rheumatologist is so slow and just wants to have me attend clinic once every 3 months for 5 minutes and be gone. Am now going to investigate what tests can be done as I have multiple symptoms which are so severe. I am Just being left to cope on my own. I am Also needing a hysterectomy and a gallbladder removal operation so I need to do my homework. Do you know what causes severe bloating and water retention and could it be related with lupus or Sjögrens. I need answers as am getting nowhere with my rheumatologist and dr. Thank you so much for sharing your knowledge as I realise there’s so much more I don’t know about my health. Have a great day. 😀
When I go into phlebotomy I say good morning and then follow it up with my veins are really difficult to find and always best to use a small needle. They are always grateful for the heads up.😀
Thanks for that as I will remember your words when I next go into hospital within the next few months. I don’t want a repeat of not having a small needle ever again. 😂. Have a great day
So sorry to hear what you are going through this happened to me as I need so many blood test done my veins were rubbish in the end my consultant said I had no choice but to have a portacath put in this has been my life line as I have to have bloods take twice a week for my INR as its all over the place also if I need iv drugs its used for that , however I have had 5 put in over the last 7 years as they can get infected and block the one I have now has ben put in on my left side of chest as I had so much scare tissue building on the right form previous ports thankfully this one has lasted the longest and I'm up to 28 moths with out problems hope it continues ,
I do have lupus and APS and a lot of other medical problems I am a very complex case as my consultants an GP say but they are very good were I live ,
I hope you get sorted soon take care
Rachel
Thank you so much for your advice as now I understand why I reacted the way I did and realise it’s the auto immune system causing my struggles with body temperature. It really helps me when I see a specialist as I now know what questions to ask. Have a lovely day and thank heavens your now getting the right medications to get you well. 😀
Can I ask about why you needed extra saline for your operation is it because of Sjögrens am just trying to figure out if I have it too. Is it because your more dehydrated with the condition. Am trying to get as much information as possible before my next operation and meeting with my rheumatologist. Thank you. 😀
Thanks Louise for letting me know. Yes my results for the inflammation markets were sky high so it makes sense. Have a great evening. Cheers.
Is it just lupus or is there something else too? Anyone else got lupus plus an arthritis type condition....
Lupus, Sjogrens or something else?
Feeling cold 
Uncertain what is causing my problems. Could it be lupus?
Is it the drugs, the condition, or something else? 
