I hate waiting

I am hurting so bad right now and I can't do anything about it until January. I feel like I am going to lose my freaking mind. I just wish they had given me the diagnosis so I wouldn't have to wait to get treated. I've got stupid mouth ulcers, severe pain in my joints all at the same time. I believe I am having a flare, I've run low grade fevers for days now. Is there anything I can do to make it through this, or at least make it easier to go through? I would love to stay in bed but I'd just hurt lying in there lol.

What are you waiting for until January? Is it a wait for your next doctor visit or to get medicines? That is not satisfactory. I would call doctor and demand to be seen sooner. I recall the joint pain from my early days with lupus. No fun. Luckily, my lupus symptoms aren't as bad lately, but it never takes long for a flare up to occur, as we all know. Hang in there until the doc sees you. Maybe he will make a house call. Hah

Thomas Franklin

Your family physician should be able to manage your care until seen by a specialist Are you not taking NSAIDS? They can help tremendously and are part of the medication arsenal of meds for this illness

The general medicine clinic can't treat me, they refused to refill the plaquenil, pushing me off to the rheumatologist which I don't get to see until January. I'm going to call and see if they can get me in sooner but I don't have much hope. Too many like me unable to afford health care and have to use a hospital for free care and there's just so much that they can do. What I am more afraid of is that they will make me undergo the same tests that I just took because they want to do it even though it was a different clinic that had them done but through the same lab which will take about a month for me to get the results because of the backlog of appointments.

I can't take nsaids anymore, they cause extreme stomach pain in me and I can't handle that on top of feeling horrible.

I feel like that since the clinic knows something is wrong, said that the tests and symptoms pointed to lupus, put me on the medication to treat it, decided to just drop my health care. Turned around and said that I was too old to have lupus. They didn't want to officially diagnose it. It's just so depressing.

You’re never too old for Lupus.
To help with stomach problems from NSAIDS, take OTC Prilosec up to twice daily even though package says only once. This is approved by my rheumatologist at Stanford University Hospital, though I see her at her private practice.
For the mouth ulcers use some orajel or I prefer one from Kanka that is in pen form and brushes on so you don’t need to dirty fingers etc.
Fevers, alternate between your Aleve and Tylenol. They are 2 different types of meds. Tylenol is not an NSAID.
For joint pain, use some icy hot, ben guy, etc. I personally like Activon or Bio-freeze as they don’t burn my skin. If you don’t like those out need more warmth check your local stores now for electric throw blankets. They are larger than heating pads and more comfortable too.
These are all over the counter things that can help you cope with your symptoms. However, they’re obviously not a cure.
Also, I am not a doctor and don’t profess to be one. I am a Lupus patient that had been on treatments for over 25 years but have been sick since age 7 and am 51 now.
Good luck to you and please let me know if I can help any further. (((HUGS)))

For your joint pain, try ginger and turmeric, they are natural anti-inflammatories..... they help me a lot. Warm Epsom salt baths also make you feel good, maybe put some quality lavender essential oil in, a few drops is all you need. Good luck, and feel better.

Oh Rebecca I feel so badly for you, but you have been offered some good advice so far. Too old? I’m 57 and was just officially diagnosed two weeks ago. Looking back I’ve had the symptoms for years but it’s so difficult to put it all together and realize it points to one thing. I had a major flare beginning in March this year that didn’t start to subside until September. I went to three different doctors, had so many tests run, and finally one ran the ANA thinking that I had Rheumatoid Arthritits. ANA was positive, anti dsDNA was also, I was sent to a Rheumatologist, he cautiously wanted to run new labs before he diagnosed SLE. My stomach would wake me up at night with waves of pain, and it was suggested I take Prilosec. (I thought it was just for heartburn). It has worked very well. I just began taking Prednisone and Plaquenil. I know all of the symptoms you are describing, I realize what people mean when they say it takes years sometimes to be finally diagnosed. As Poobie said, a PCP should be able to provide palliative care until you can see your specialist. This disease is incurable and can be difficult to manage but you should not have to suffer this badly for months. Please keep in touch, people here sincerely care.

sweetie I would advise you to go to the er right away, if you do not have ins, just make sure it is a community hospital they are required by law to see you, and so tht way they can bill you, but you need some prednisone, and Percocet....so do it please. god bless you and you are in my prayers.........purrs..catspaw1955

I didn't get diagnosed with Lupus until I was 58, so there is no "age limit" of when you can get Lupus. Its worrisome when your physician's office tells you things like that.

Are there other doctors you can try to see? Can you call your insurer and tell them you are not getting the care you need and ask them what they can do about it? Going 3 months without a physician when you're experiencing these symptoms is just not acceptable. Unfortunately, in our medical system, sometimes you still have to fight to get the proper care.

Regarding the pain - I have had stomach problems all my life and have always taken some kind of antacids, eventually staying on Prevacid all the time. I've avoided too much aspirin because I was afraid of the effect on my stomach, but one day I was so fed up with the pain that I took a couple of aspirin in addition to the tylenol and tramadol (which hadn't been managing the pain on their own) and I couldn't believe the response. The pains STOPPED. Literally, STOPPED. So, I'm taking 8 aspirin a day (325 mg ea), taking my Prevacid and have Digel/Gaviscon (only because they took Maalox off the market) and Tums available for the first sign of stomach upset. My whole flare seems to have calmed down - its hard to believe this is a coincidence, especially since aspirin is such a great anti-inflammatory. Anyway, this is working for me until the rheumy can come up with something better, lol.

Also, I have found that ice packs on the joints/muscles/bones that are aching help kill the pain too.

Good luck - and be your own advocate!

I called the rhuematology department and the lady I spoke to wasn't pleased with how I was treated either. She gave a note to the dr to see if they can work me in quicker. Thank goodness I don't need orthopedic help because the waiting period is almost a year. I don't have insurance because medicare wasn't expanded in Louisiana and can't afford ACA. My ribs have been hurting so bad that I used some of the pain rub stuff I have on them and it helped. If I lived in another state I believe I would get better, quicker help but I can't move right now.

My heart goes out to all of you who live in the states where their elected representatives chose to make a political statement at the expense of the healthcare of their constituents. None of the "end of the world' predictions regarding ACA came true, and the states that expanded Medicaid have been able to provide access to medical care for a huge number of previously uninsured people. My story is a long one, but I was insured up until March of this year, and if Oregon hadn't supported ACA and expanded Medicaid - I would be uninsured now. How can you be uninsured and manage lupus?!?!? I can't even imagine how awful that must be.

Well - it is an election time - good time to go out and vote for the candidate who supports and will protect access to healthcare for all - NOW - not some vague time in the future.

Hey Rebeccainla I am so sorry to hear you are going through this, pain is never a good thing. For the joint pain and possible flare try organic tart cherry juice it lowers the amount of inflammation in the body so can help those symptoms, also omega 3 fish oil but that took longer o kick in for me as for the mouth ulcers try mixing baking soda and warm water to make a mouth rinse ( it will help reduce the acid levels in your mouth and reduce the pain from the ulcers) and there are wax strips you can get that are made for people who have braces but they work well for the ulcers too just cover the ulcer with the wax strip to keep food out and protect the area. And of course get medical help from your rhummy if you can. I hope I helped. God Bless Julie

Update: I went to the ER yesterday because my ribs were hurting so bad and the pain wasn't going away. I also wanted it documented on my chart and make sure nothing was seriously wrong. It was some kind of inflamation but they didn't know why etc but said that it was related to the stuff going wrong in my body. I got a script for tramadol but I'm broke so I'm going to have to wait to get it filled. Just got an update on my medical record and I see that they have diagnosed me with polyarthritis which goes along with the suspected lupus. It also goes along with rhuematoid arthritis but none of my tests were positive for it including the xrays I had one my hands. The only thing that was shown was vasculitis.