New to this site

New to this site

Hi everyone. I am looking for some answers. I was diagnosed with fibromyalgia in 2006 with some crazy labs but no pos ANA. About 2010 I got really sick and had so much inflammation that everything was inflamed and I could hardly get around by myself or even bend my wrist. I went to my GP and he said that it was the fibro and I need to accept it. I knew that it was something else. I was so sick and fatigued and swollen I had to take a leave of absence from work for a month and went to rheumatologist. He listened and did like 20 or so labs and I had a pos ANA, pos HLA-b127 gene, lots of inflammation, neg for Lupus. His diagnoses was an autoimmune inflammatory arthritis in the RA family called Ankylosing Spondylitis. It is rare. So I have been on Embrel injections once a week since and it helps so much. I have flare ups now and then mostly from stress and the physical demands of my job. About the last 4 months I have just not felt well at all. My blood pressure has been way to high along with my heartrate. I do have hypertension and SVT. They can't connect the SVT to anything so have no idea why I have it. I have been having problems breathing. I can't take deep breaths and all day long I am unable to catch my breath. I have been so fatigued these last few months it is terrible. I go a few days without taking a shower because it wears me out and is just too hard. I don't go to the grocery store unless it is a tiny one, so I order my groceries online and pick them up the next day. I haven't been to a mall in about 2 yrs. I can't, I just get too tired quickly and my legs get so weak I feel like I am about to collapse. I have a cane that I use a lot except at work. I go to work m-f and come home and that is it. I am so exhausted I can't do anything else. I have narcolepsy also but take a stimulant for that. I sleep about 3-4 hrs of broken sleep because I have so much pain. I have been getting these nasal sores just inside my nostrils and they hurt and get so dry they crake and bleed. My entire nose has been turning dark red and I have been getting red checks a lot lately. I also get about 3 different rashes on my skin. I get the circles all over my whole body that come and go all day. I get little red bumps that tend to stay around. My skin on my arms, neck and chest get red off and on through out the day. I get low grade temps all the time that never goes over 100. My fingers swell off and on all day and turn red and hot and look like they are going to explode. I have been getting sores in my mouth everywhere for my whole life. I don't know. I think that everyone know their body and when something is wrong and I have always been correct in the past. Something new is going on. I do have an aunt that has had Lupus for about the last 30 yrs. I just don't know what to do or where to turn for help. I feel like my new rheumatologist doesn't listen to what I say. I just want to give up because I am too tired to fight and deal with something like this. The only family that I have are my 4 kids and they are grown and have their own lives. So I don't have must support or help. I just want it all to end. I see no purpose to live life to just deal with all this illness. I feel so lost and it is nice to have people to understand because they have been through it. Any help would be great.

33 Replies

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  • Hi just wounding what the ANA test is for thanls

  • Hi Ray

    ANA shows there's something wrong with your immune system and if positive further more specialist tests need doing by a Rheumy.

  • Hello wildcats

    I'm so glad you found our forum. lupus UK is wonderful and this forum is a lifesaver. And it's high time you got real suppprt: the system is clearly not doing its best for you

    My feeling is that if your clinic doesn't pull its socks up, you may need to be seen at a Rheumatology clinic with special expertise in immune dysfunction & Connective tissue disorders...especially lupus, sjogrens etc. I know this because I spent nearly 40 years being unconvincingly diagnosed & treated with various secondary & overlapping conditions + helped in emergencies before I was finally referred to my local specialist lupus clinic where a briilant rheumatologist figured me out....now we know I have infant onset lupus....go figure...the good news: 6 years on from diagnosis, I'm feeling less pain + more stamina, resilience & comprehension than I've had since my early 20s...I'm 63, and my life has been "rebooted" ๐Ÿค—!

    Paul Howard from Lupus UK monitors this forum closely, with the help of several colleagues. He is very good at helping us find the right clinic. I'm sure he'll see your post.

    Likewise I'm sure you'll get great replies coming in with really good suggestions. For 6 years now, I've seen this forum be consistently brilliantly supportive to me and hosts of others

    But for now, am sending you a big gentle hug

    Courage: things can & will improve for you

    ๐Ÿ€๐Ÿ€๐Ÿ€๐Ÿ€ coco

  • Thank you so much. I don't want to mess around with Drs. not taking me serious for yrs. I will do some research for somewhere more specialized with what you suggested.

  • Bless You don't give up ๐Ÿ’›

  • Hi wildcat

    Love your pic and welcome to the forum. Hope you like being here and it's helpful. So sorry to read of all your health problems and what a tough time your having!. I know you've said your Rheumy is new but I really feel you need one who is prepared to listen, basic requirement of the job really!. In view of your family history with lupus I feel this should be looked at as well as your symptoms. Could you see another Rheumy in the team at the same hospital?. It's tough when another opinion doesn't work out as we'd hoped and difficult to know what to do!. Take Care. X

  • Hi , have you told your rhemy about the new symptoms ? You must insist he does further test , many people on this site have struggled for years trying to get a correct diagnosis , lupus can be difficult to diagnose and many people are initially told it is something else . Your rhemy has said you do have an autoimmune condition and often when you have one autoimmune condition you can go on to get another , say to him what you have said on here , that you know your own body and you know something else is going on and you were correct in the past , it is difficult when you are on your own , I am the same I live on my own apart from my dog . I have 3 grown up children who do have their own lives but are certainly very caring and helpful when I am very sick . Try to take someone with you to your appointment a relative or a friend , that may give you more confidence to say how you feel and be a bit firmer with the consultant . I am sure you will get many replies on here later in the day , take care .

  • Hello!!! So glad you posted after our little exchange yesterday! When you say positive ANA but no positive test for lupus, what were your blood test results? Can you let us know? You've had great advice from everyone above. I agree you need a new Rheumy, preferably a specialist. But when you say mall, I'm thinking you are American. Do you live in the States? Lupus UK can advise on doctors here in the U.K. Anyway, glad you're here. Keep talking to us. We'll help however we can. Stay strong. Wendy

  • Yes, I live in the states. What kind of other specialist is there for autoimmune diseases beside Rheum? Someone suggested an Immune dysfunction dr but I have never heard of one in the states. Medicine is practiced so different here. We don't have access to the better meds like other countries.

  • I thought so. It would be a Rheumatologist or an immunologist, but I really meant a lupus specialist. I.e. a Rheumatologist who specialises in lupus. What part of the states are you from? How can we find out if there's a lupus specialist in your area?

  • I live in Indiana, Midwest. So I need to look for a Rheum that specializes in Lupus then? Never checked into an immunologist or if we have them over here but I will right away.

  • Have you contacted the lupus foundation of america? There will be a local chapter I imagine - there is an Indiana one:

    lupus.org/indiana

    Under Find Help there is a list of support groups - where you always meet people able to recommend a doctor - as well as a list of medical professionals

  • Thank you!

  • Ok, so I looked at that site and got some names and also looked up immune specialist. I will be researching some names I found and making appts mon for sure. Thank you

  • On the blog Despite Lupus they have a list of "great doctors":

    despitelupus.blogspot.it/p/...

    and I note that Sara Gorman who writes the blog says if someone sends her an email she try to help with recommendations local to them. She does a lot of lupus advocacy and has written books about living with lupus.

  • Ok, thanks. I will check that out. Wish that I could find a dr that has an autoimmune disease, then they would understand and work harder to help me.

  • Unfortunately, not too many of them!!! But I know what you mean. I did meet a rheumatologist at a meeting in Whistler last year who has a form of RA. They do exist!

  • Touche' !! ๐Ÿ˜‰

  • Hello Wildcat. I'm so glad you posted here and really hope that all the lovely replies have kept you going.

    The Enbrel has helped you a lot which is great but perhaps you also have other autoimmunity that it isn't addressing? The anti-TNF and Biologics can occasionally cause drug induced Lupus and other skin problems but you will know this I'm sure. So please do get tough with your doctors and tell them how despairing and unwell you really feel.

    I would also ask to be tested for rare forms of Vasculitis such as Behcets and Wegener's Granulamatosis. We can develop resistance to our meds so this perhaps needs adapting and adjusting again i.e. Enbrel plus Methotrexate or Hydroxichloraquine? Have you also had tests done for mineral and vitamin deficiencies abs thyroid and do you take care of your diet and supplements accordingly? This can make a big difference if not.

    I know how isolated you feel because you told me on another post and we can't have that. So we are all here for you as you can see. This is a fabulous community and you should never feel alone if you come here - as I hope that you will. X

  • Ps you look lovely and so does your ๐Ÿฑ

  • Thanks! I rescued her from a shelter after my divorce and she is older and so cuddly. She is my baby!

  • Do have any suggestions on supplements? I know that my vit D level is low, my thyroid is normal and I know that I need to change my diet. I try to eat a fresh vegy at lunch, but at dinner most of the time I am so exhausted I eat poorly because I am to exhausted to cook properly.

  • You can buy vitamin D3 over the counter from a chemist - but if in the UK then you should check with your GP how much you need and have it added to your prescription sheet possibly.

    Re foods, try pasta or rice with some pre prepared roasted veg or just a spoonful of tinned or fresh tomato, fresh basil and olive oil and some grated Parmesan.

    Very quick - and cheap as ready meals but healthier - you can add stuff like pumpkin and sunflower seeds, sweet corn, meat, tuna etc. Pud could be frozen berries with custard heated in microwave and granola sprinkled on top for some crunch. Or even cereals that are fortified with fruit is pretty healthy.

    When I want to snack I go for a washed carrot and a piece of cheese or some hummus, honey or vegemite. Or some rice cakes with cottage cheese and vegemite or wholemeal peanut butter with a banana. I try to avoid gluten and too much dairy personally so stuck to gluten free pasta and no bread but Gf oatcakes. I have to stick to fresh, healthy foods because my guts are so badly affected by connective tissue disease - ready meals or junk food play havoc but i do sometimes have oven chips if time is on my side. Rice with veg bean or mince chili and lots of salad and some yoghurt is another quick favourite. You could make extra and stick it in sealed pot in fridge or freeze?

    Hope this helps a bit. X

  • Hello. I have mixed connective tissue disease...i.e. I have bits of several

    Auto immune diseases (not the best bits as far as I can see!)

    The auto immune diseases are very tricky for us to figure out. What you need above all is a rheumatologist who is not interested in just hips and knees. In other words a specialist.

    I don't know where you live but your GP can refer you to one out of your region if you ask.

    I love your pusscat. Mine is interfering with my keyboard at the moment.

    Good luck......you just having to push, question and if necessary demand the treatment you need.

  • Hi glad you've come to site for support. I guess you are in the states so some our advice from GB wouldn't be so easy for you. Many of the auto immune condition overlap and are treated in a very similar way. However, many are misdiagnosed until more symptoms appear, so its really important that you go back and with you new symptoms. Many rheumys will treat lupus with positive ANA without positive lupus. Sjorgens also has many similar symptoms, ie dryness of mouth, nose, lungs, bowels, inflammation, ulcers, rash and can be as severe.

    Please return although its tiring.xx

  • I have the same symptoms as you when I have a big flare up. What helps me is steroid injections - I would say to your rheumy that no matter what your diagnosis your symptoms are unbearable and they need to treat those and improve your quality of life. If they can't commit to doing that then I would find a new rheumy who can. There is a difference between finding a diagnosis and treating the symptoms, and ideally you want a rheumy who is prepared to do the latter before they work out the former. They are out there I promise. Lots of luck xx

  • Hi Wildcats85,

    I'm sorry to hear that you have been so unwell and you feel that your current rheumatologist doesn't listen to you. It may be best to ask your GP to refer you to a different rheumatologist for further investigations. If you let me know what are you live in, I can provide you with information about any lupus specialists we may know near to you.

    If you need more information about lupus and how it is diagnosed, you can request or download one of our free packs at lupusuk.org.uk/request-info...

  • I live in the states so I don't know if you have any resources for here. The thing about the way our western medicine works is treat the symptoms and keep the patient quiet and happy. It is hard to find a Dr. here that really listens and works with you. My cardiologist will. He even studied up on Ankylosing Spondylitis when I was diagnosed with it so he would understand it better to help me better sine it can affect the heart and lungs. I find this site a life saver. Nothing is better than someone who understands you and what you are going through than someone who is dealing with the same thing.

  • Hi Wildcats85,

    You can still read and download all of our publications at lupusuk.org.uk/publications/

    It may be worth contacting a support group local to you to see if anybody can recommend a consultant who is knowledgeable about lupus and listens. You could start by contacting the Lupus Foundation of America. Their website is lupus.org/

  • Good morning! I am not in UK (i am in USA) but there are so many others on this site that can relate that i joined anyway. I, too, have r.a. & fibromyalgia. I am a nurse to top it off. I really feel so sorry for you ~you've got so much going on. Sounds like you likely have other things going on, i am so sorry. :(. Enbrel works pretty good ~ it seems as if ALL the RA meds have alot of side effects...stress & sadness very much > the likelihood of having a flare up. I think you going to a rheumatologist was your best bet for starters! GP's are fine, although i am big on specialists. I hope & pray that all of your symptoms get well under control...not sure whether of not you eat pork, but that does > inflammation & so do tomatoes (spaghetti sauce, catsup, salsa & fruit juices). Take care! ๐Ÿ˜‰ Lisa

  • I think it's time you also applied for disability so you can rest and heal from 5 days of work.

  • I have looked into it with an attorney who specializes in disability and there is a yr waiting list to have your case reviewed and you can not work from the time you apply. I am a single mom so I asked how am I suppose to live on no income? Our lovely government here doesn't care. I have worked and paid taxes since I was 16, 33 yrs, and this is the help I get. Makes no since. I am in school to do insurance billing and coding so it will be a computer job that I can do at home. I just wanted disability until I get through school in about 2 yrs. But no luck.

  • Sounds like California where I live. I too kept working

    When you really need help you can't get it

    My sister went through all this and it was torture of paperwork but in the long run was worth it

    Keep trying he may be wrong

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