Today is a bad day and I feel so alone. Being in pain and not knowing what is wrong with you can really put you in such a depressive state. My doctor appointment is finally almost here (next Friday) and i almost cant even stand it. I am beyond nervous but super excited at the same time. Surely he can figure out what is going on with me. Being at work some days just sucks and makes me feel even crappier. Don't get me wrong my boss is super nice and is very accommodating but I hate that every morning when he comes in the first thing he says is "You feeling better today"? Umm no I'm not! Sometimes I just lie and say I do just because it seems easier that way. Sometimes I get "You don't look sick today" and I hate that. All I can seem to say is "Well I guess that's one good thing huh cause it sure would suck to be sick AND look sick" Sigh ..... Anyways last week I saw my pcp and he still seems to think that the redness and swelling in my ankle is somehow lupus or some kind of arthritis related. He ended up taking me off the Plaquenil as he saw how much of my hair I had lost (been putting it in a gallon size ziplock bag so I can keep up with how much I was losing) and also I had started seeing wavy lines in my peripheral vision. More like when you look at pool water when the sun is hitting it how it looks wavy and glistening - that's what i was having. Anyways he said he wasn't sure 100% if the Plaquenil was causing the hair loss and eye issues but he didn't want to take any chances and said he feels more comfortable with the Rheumatologist prescribing meds for whatever is wrong with me. Hes really nice and great bedside manner and I know its not his specialty but sometimes I feel like if its anything more than a cold or something he wants to brush me off. Maybe I am being too sensitive. Anyways last weekend I decided I was going to go for a walk around the block.... BAD idea. I thought maybe if i got moving it would help loosen me up. It didn't and then the next day I was out for the count. I slept the entire day and was in so much pain I couldn't move. Some days I feel like I am getting better and then other days I can barely move. I just don't understand :( Anyways when they do blood tests does anyone know how long I will have to wait to get the results? I know by talking to the girl who set my appt up that she said to expect an examination and lots of blood work. Not sure what all they are going to test for. Also, to anyone else experiencing hair loss - is there any certain shampoo that you use that seems to help any? Not necessarily with the hair loss but maybe with strengthening the hair? Anyways thanks for listening (or reading rather) :) as sometimes I guess you just need to vent with people who know how you are feeling. I know it could always be worse and I thank God that I can at least make it to work. Prayers and hugs for everyone having a bad day!!!!
Is your pain related solely to your ankle? If so what has the orthopedist said? You can still have lupus and an unrelated type of arthritis and if so you then need 2 different doctors to treat Hair loss is common in lupus - the wavy lines in your vision may be related to migraines
So sorry you are going through so much! On the shampoo I use nexxus, I’m still loosing but I’ve noticed it to look fuller and nicer! My hair dresser even noticed the difference. Hope that helps and you get answers soon!!
I havent seen an orthopedist - waiting to see what the rheumy says then will go from there. The major pain and swelling and redness is solely my ankle but i have shoulder pain in both shoulders, left knee pain, right wrist pain and a very swollen thumb joint and then i guess it must be muscle pain because the pain is on the outside of both my thighs maybe a hands length under your butt i dont think there are any joints there? also i have this awful burning sensation in my left shoulder blade Can you have migraines without pain? when these attacks occurred ( i had about 4 total) i didn't feel like i had a headache? Guess that is why i assumed it was the meds. Thanks Louters I might try that - can you buy that at the store or do you get that from your hairdresser?
Go ahead and vent Angie81... you need to. My life has had lupus for 15+ years and she fights frustration, anxiety and depression everyday. It is hard to find friends who understand but most likely you find them among the chronically ill. You really do need a solid rheumatologist rather than a PCP. There are many treatments but they must be careful how they try them because people with lupus react in unusual ways to drugs and changing too much too fast can mix things up.
We have seen probably more than 10 rheumatologists over the years and my advice is... when you find one that CARES and has EMPATHY, keep them at all cost. We've run into a lot of very proud and unfeeling doctors who don't listen to the patient. Listening to a lupus patient is hard and depressing...so many pains and problems.. but a good doctor knows the value of treating the patient like a human being and not just a another case.
The best advice I can give, that my wife has learned, is to get on a healthy diet, eat close to nature..avoid all inflammatory foods (so many out there), try to get your body more alkaline and in her case, stay away from the sun! For her even a a few minutes of direct sunlight throws her in bed for a day or more in severe pain, swelling, etc. It started small but over the years, we've had totally protect her.
Best wishes and keep trusting God and praying!
Wow thanka Greg you sound like an awesome hubby! Mine is supportive as well and i dont know what id do without him but its hard right now without an exact diagnosis and treatment plan he doesnt fully understand what or why this is happening but hey neither do i lol he is going to my appt with me next friday so hopefully we will both come away with a better understanding and some answers prayers and hugs to your wife ive only been this way for a few months i cant imagine the pain she has endured over the last 15 yrs bless her!
Hi Angie. Sorry to hear that you are going through a Lupus flare. Truly miserable and impossible to explain to someone who doesn’t understand anything about Lupus. I was diagnosed with L about25 years ago. I have been on so many drugs I have forget most of the names…or maybe it’s just the “lupus fog”- that all lupus patients experience. Reference your hair loss.'I started losing my hair about 6 months ago. I tried numerous meds and treatments but it just kept falling out. I now have 3 or 4 wigs to wear when I go out and caps when I am staying in. It was so difficult to accept at first…one more thing lost to this miserable disease. I now have decided that my wigs are better looking than my hair was. Maybe I am just kidding myself, but my beloved husband is so supportive he makes me feel beautiful regardless. I didn’t mean to write a book(!) but got carried away. So, make sure you have a great rheumy, keep s diary of how you feel and if you are aware of anything that triggered an attack what meds you are taking …the more info you have for your rheumy the better. Stay strong and depend on Christ to give you the strength you will need. God bless you.
Angie, it’s me again. I forgot a major point! Why don’t you take one of the many lupus pamphlets available and give it to your employer. I think you will feel better if he has some understanding of what you are going through. So, good night and God bless again!
Linda Bull
I had wavy lines and cored splotches in my vision (was on no meds at the time) and neuro dx’d it as optic migraines.
You need a good PCP and a specialist for each of your problems. I have a rheumatologist, urologist, opthamologist, dermatologist, ENT, an I'm not real sick(yet). Lately I have had more trouble with my ears than anything else. I have Lupus, lichen planus and those skin issues has played havoic with the skin IN my ears. I go to my ENT every 3 months to get the wax and dead skin out of my ears. On the last visit he said I MAY need surgery to get all the dead skin out of my ears because it is way back where he can't reach it without hurting me tooo much. Dwell on the good days. Know your limits. Good Luck
Cindy
Angie81,
It's super that your husband is going with you. Having an understanding of your illness throughout the family is priceless. Also, Greg and Cindy are absolutely right about finding the right doc for the problem. My PCP is awesome, but at this point he mostly just keeps records from all of the other docs...Rheumy, Cardiologist, Nuero, GI, Ophthalmologist, Hematologist, Nephrologist, etc. This way when I move, I should only have to get records from one. In the last several months, however, my Rheumy has become my PCP for all intents and purposes. Having the right doc for the right condition is vital.
As to blood tests, in my experience, it's only a couple of days before results are in. I guess it would depend on whether your doc has to send the samples out or does them in house. Expect a urine test as well, and hydrate before your apt so that it's easier to get the tests.
Hope you find the answers that you are looking for. Make a list of questions before you go so that you don't forget at your appt. This is very helpful.
Best wishes.
Angie81 said:
Wow thanka Greg you sound like an awesome hubby! Mine is supportive as well and i dont know what id do without him but its hard right now without an exact diagnosis and treatment plan he doesnt fully understand what or why this is happening but hey neither do i lol he is going to my appt with me next friday so hopefully we will both come away with a better understanding and some answers prayers and hugs to your wife ive only been this way for a few months i cant imagine the pain she has endured over the last 15 yrs bless her!
Here's a thought. I have a friend that had optic migraines that turned out to be cataracts. Here severe headaches were from not being able to see. Good time to get your eyes checked.
Amber said:
I had wavy lines and cored splotches in my vision (was on no meds at the time) and neuro dx'd it as optic migraines.
About getting results for blood work. 3/4 of my blood tests I get the results the same day.
All my Drs belong to what they call foundation Medical partners so every time you go to any dr it is all on your record I think that is very helpful. I can even get into all my records but I have to set it up and i'm not too computer literate.
I'll get one of my grandchildren to set it up for me.
Stay Positive
Cindy
Angie,
That’s what we are here for to listen to you even if you just want to vent my hair has fallen off so much as well didn’t know if it was a flare from the sun or just the LUPUS itself but am taking Plaquenil as well so guess that must also not help it have an appt with my rhumy tomorrow see what he says and I will let you know. My hematologist told me not to worry that my hair won’t completely fall off but when I loose a handful of hair every time I shower and comb it makes me a lil more sad being a woman that is something that is bothersome but will see if it starts getting better. I also take Biotin too see if it helps and someone here said she used Rogaine for women and it helps so going to try that too. Hope you feel better god bless.