So confused

My GP is not providing any help but keeps writing pain killer meds prescription.  I have rashes that gets bright red when exposed to even 5 mins of sunlight.  Rashes appear randomly on my body.  The top of my feet and hands itch like crazy and they swell up.  I'm so tired of being tired.  I've been telling my dr all of this and she says oh it's just hives.  Oh it may be raynauds syndrome.  Oh your feet don't look swollen.  Oh you're fine.

Look at me - my face is bright red on my cheeks and nose.  I have scars from scratching till I bleed.  I'm exhausted every single day.  I don't know what to do.  And my ana direct test says "Result - Positive" "Flag - Abnormal ".   What should I do?


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15 Replies

  • How about ask for a referral to a dermatologist? This Dr. has quit practicing medicine with you and you need someone who cares about the rashes, swelling, itching and Positive ANA. Also look for a new GP. Take pictures of your rashes and swelling so you have them for your appointments. I wish you the best of luck in getting the answers you need. In the meantime, why not try wearing a good sunblock when out in the sun? You may well have an allergy to something in sunlight. I had this for a few years and it was pretty miserable.

  • You need referring to a rheumatologist but it was a dermatologist who diagnosed Lupus for me. My reaction to the sun and UV did not come under control until I had been on hydroxy chlorine sulphate for a few months.

  • Unless you are in a single-handed practice (officially not allowed in the UK now) you can see any GP you like. Find another - change practice if necessary.

    It may "just be hives" - however, hives are not a diseases in themselves, they are a symptom of something and that something needs to be identified. Take someone with you to an appointment - having a third party in the room who will vouch for your state often concentrates the mind of the dismissive GP. Especially, I'm afraid to say, when the person with you is male. She is effectively accusing you of lying when you say you don't feel fine - which really is just a bit unprofessional in a GP.

  • Unfortunately most GP's are not aware that sunlight that may cause rashes (or make them appear worse) along with someone that complains of chronic itching in one or multiple sites MAY be a sign of Lupus, especially when a patient complains of being overly tired or fatigued. Only 30% of Lupus patients will show a "butterfly" rash on the face. Ask your GP if they would consider doing a DS-DNA which is specific for Lupus.

    Dr. S.  (in the USA)

    P.S. I know Raynauds can cause severe itching as well so you probably should have a CBC and ESR as well.......are your hands and/or feet often cold? Unusual to have Raynauds without this.  Sometimes antihistamines and even calcium channel blockers help can help the itching. If you do have Raynauds.........additional tests are usually run to differentiate Primary from Secondary:

      1)  Arterial Doppler and/or large vessel imaging if atherosclerosis in the large arteries is suspected.

      2)  Dermatoscopy or ophthalmoscopy, in addition to capillaroscopy, to identify capillary abnormalities.

      3)  The presence of ulcerations of the fingers or toes is usually a sign of secondary Raynaud’s phenomenon.

    P.S.S. If you have any questions, please don't hesitate to email.

  • I've asked her for further testing but she suggested I wait 6 months.  I'm not sure why but I'm definitely not waiting.  Last night was horrible.  The tof of my feet and bottom of my feet were so itchy.  Then they were swollen.  I started scratching so much that the bottom of my righy foot was bleeding.  My hands turn red and swell and I get this burning feeling when cold or when I wash my hands unless I use hot water.  I tried to show my dr pictures of my rashes and she didn't even look at it.  She saw me for 3 mins...wrote a prescription for hives and told me this will help during pollen season.  I don't even have allergies...I'm so grateful to have you guys to vent to and get advice.  Thank you so much.

  • As a Doctor I should not criticize another, but in this case I will.....BAD medical practice. I NEVER ASK A PATIENT TO WAIT 6 MONTHS BEFORE I DO FURTHER TESTING! You need to see a different Doctor.........NOW. I don't know how medicine is practiced where you are, but are you able to see a Rheumatologist?  You need various blood test done to find out if you have any auto immune disorders (and possibly some other tests as I described earlier or even others).  I have always told my patients to ask questions, be assertive and even aggressive with doctors that don't listen or take your problems serious enough. You need to be very aggressive and DEMAND to be seen by a Rheumatologist NOW! There is absolutely no need for you to be suffering like this. I am a retired Neuro_Ophthalmologist, but I would have immediately referred you to the right specialist for your problem. PLEASE don't wait, be ASSERTIVE and AGGRESSIVE! If you need my help, please don't hesitate to email me again.

    Dr. S  (in the USA)

    P.S.  If your Dr. thinks you JUST have hives, did he/she prescribe steroids to relieve your symptoms?  I myself am confused by your Doctors thinking.

  • She did prescribe something but if she read my records she would notice that she prescribed the same thing to be 2 months prior.  She doesn't look at the pictures I wanted to show her.  I asked her well what about my hands and feet - you told me to Google Raynauds Disease and I don't know if that's what I have.  She simply said "oh"...and that was that.  I topd her I don't want to just take prescriptions, I want to know what's wrong with me.  She told me I worry too much and since it's pollen season that's all it is...hives.  Then how come I had hives in November?  It's not hives.  I know what hives are.  And my cheeks and bridge of my nose...that's not hives.  My back was hurting was bad as well as my ankle, shoulders and neck.  The pain got less intense so I didn't bother to bring it up to ny dr.

    I thought drs are supposed to help you find what's causing the issue and help you resolve it.  6 months - she wants me to wait. I guess she's not interested in making sure my keppra level is good since I have seizures and my sugar levdl since I have high cholesterol and triglyceride.  When I switched insurance company i chose her...I wish I could have my old dr back.  But if anything I thank you so much for not making me think I'm crazy and for your response.  I wish drs could realize that if they were to take the time to would help us alot.

  • You definitely are not "crazy" and your symptoms do concern me.  You have to be careful taking any type of steroids if you have elevated sugar (it can also elevate your cholesterol and triglycerides, but on a short term basis would not worry me). I would not want to drive your blood sugar up and create a 'crisis' situation......I assume you monitor your blood sugar everyday. If you have been diagnosed with diabetes then I assume you are on meds and monitoring your sugar levels throughout the day. I don't have enough of your medical history to truly make any diagnosis. You need a Dr. that will take a complete medical history, get a diagnosis for ANY and all of your medical problems, make a treatment plan and put you on proper meds for all of your problems. The object is to get you feeling "good" and to maintain a healthier state of being. I spent 4 years in Medical School, did a 6 year residency and a 7th year becoming a 'Fellow' in Neuro-Ophthalmology. After all that education, I don't think I ever made a diagnosis or treated anyone in only 5 minutes. Every patient got my full attention and time, no matter how long it took for me to determine a concrete diagnosis and treatment WITH A FULL FOLLOW UP EXAM to make sure I was correct and the patient was responding to the treatment. I know here in the U.S. many Dr's push patients through quickly for reasons that frustrate me (I won't go into detail). I also believed if you become a Dr., then become a GOOD Dr. and make each patient's well-being your number one priority. I often didn't leave my office until 9-10PM because I needed more time for many patients. I guess many medical practitioners practice differently today....IF FRUSTRATES ME!  You need a new Dr. that will spend time and is determined to find out all your medical problems and willing to refer you to the proper Specialist that you need for each problem.  YOU HAVE TO RIGHT TO BE DIAGNOSED AND BE TREATED PROPERLY FOR EACH AND EVERY MEDICAL PROBLEM YOU HAVE.

    I will be happy to help you in any way I can. If it gets to a point you need me to make calls for you, I will be happy to. I am retired and I really don't care whose toes I step on. Don't wait 6 months.......don't wait a week. You can email me any time.

    Dr. S.  (in USA)

  • You are awesome!  Just having someone to listen or take me seriously helps alot.  I would love to keep you updated.  I am in search of a new dr.  I am pre-diabetic but haven't had my levels checked since Ddc so idk anymore.  Im on statin for the high cholesterol.  I take keppra for my seizures (pretty much under controlled after 15 yes of grand mal).  And now this...this lupus like butterfly rash.  Rashes I get randomly on different parts of my body.  Itchiness.  Fatigue.  Migraines.  Joint pain.  

    But It takes time I guess...

  • Please keep me informed......would like to see you get hellp sooner than later. B.T.W.:  if you are on a statin medication then you should be taking a minimum of 200mg of CoQ10 (also known as Ubiquinol) daily. I prefer the hydrosoluble form.  All of your body utilizes CoQ10, however the heart muscle uses the most and all statin drugs deplete CoQ10 from the heart muscle.  Please ask your Dr. to check if there would be any reason for you not to use it.  If you are a pre-diabetic, then I am sure you were told to watch your carbohydrate intake (don't worry about the sugars listed, limit your carbohydrates listed).

    Dr. S

  • Hi Ratana21,

    As other members of this community have already suggested, it is probably best to either push for a referral to a consultant from your current GP, or perhaps change GP to somebody who is more willing to listen to you and take your health seriously. You can find more information about changing GP at

    If you would like more information about lupus and how it is diagnosed, we have a free pack which you can request or download from our website at

  • Thank you so much for the information packet download and I am definitely finding a new dr.

  • SWITCH DOCTORS!They made me think I was "depressed" or "just thinking I'm not well is making me feel unwell"?No dont settle or feel bad about leaving your current DR they are not your friend they are just doing a Job like auto shop.1 comes in and out in 5 min they see you and try to patch things up will pain pill ect....I found another Dr.. I yelled at him I was upset crying ,but ultimately he listened and helped.I told him why I wanted to switch Dr's they have plenty of patients but you only have you.You are the only 1 that will fight for your health.Set sail and see another Dr if you think it's LUPUS RA and however many different varations of this dieases there is tell your PCP that "you need to see a rhemitoligist.Ask for a referral.I'm not saying they dont care I know a lot do. I'm saying they are too busy and just are overwhelemed and we get lost in the shuffle.

  • You just stated exactly how I feel.  Worrying and wondering makes it worse.  Thank you for your advice.  I have another appt on April 9th and hopefully she will give me a referral to a rheumatologist.  If not then I found a new dr I can go to in May.  I just hate having to repeat over and over and having to actually *plead* my case with drs.  

  • I hate it too I have been on SSDI since 2010!I as only diagnosed this past Christmas eve.That's how long it took, because I felt bad about switching DOCTORs.She told my Mom the same thing she refused to give myself or my Mother pain medications .My Mother does not have lupus or anything of the sort.She has NO KNEES they deteriorated away.And she would see both of us then prescribe a week of medication then that was it for a month.We both were in constant pain I switched first,my Mother is more "shy" I guess you could call it.I straight told my old doctor"you are not doing your job to my standards or helping me so I'm switching the another hospital and doctor,please forward my medical history too new DR!He at first thought and asked me"DO you do drugs??Cocaine amphetamines etc...I looked at him like he was loca and said"please test me for all drugs then find out what is wrong with me.. I will do a hair follicle test if you wish." I do not never had done or do any drugs...I was very upset he asked this because my heart rate was 150 it usually is very high thats my normal with a flare up..Then my next appointment which was a month later... I lost it I was crying shaking so upset and thats when he noticed my knuckles were bright red and hot to the touch, my face had a huge rash like a red raccoon rash across my entire face.He grabbed my hands and just hugged me it was awkward.. but he apologized and realized how I feel this is serious and I was scared for my life how bad I felt.He has been my doctor since the holidays and he is a great doctor.He knew right away where to send me and how bad I felt and that I needed help.Doctors that have been trying to figure somehting out for awhile give up or"just want to move you thru I guess they can't fix it and dont know what to do,So if your doctor is not listening let them see your frustration and let them see how worried you are.Don't go home and cry by yourself show them you feel bad you are ill and you want answers!

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