confused with the diagnosis, realistic future

kitty_dinozzo

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Jun 8, 2022
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2
hi i am new to all of this and looking for answers. I was recently diagnosis with fibro but possible may have lupus also. I am still waiting on the official results. (lupus) Been doing research but there is such a large quantity of rabbit holes to jump into i am getting lost. So to start at the beginning. My tiredness started about 16 yrs ago with random pains muscle, IBS-d, joint and swollen lymph's ect. blood work normal couple of an ANA was done all neg, just elevated white blood count 10.1 to highest 13.5 or so. Then all of sudden boom!! 2016 all sudden weight loss 180 to 120 in three to four months, graves disease thyroid issues. finally an answer!!! Went though the I131 treatment taking supplement Synthroid battling the weight issues and two years later the ever so lovely menopause at age 49 decided to pay a visit. Things were back to semi normal. Then this past year the exhaustion started again, and this annoying back pain started when ever I would sweep, mop or do the dishes. I also noticed it on the weekends after having my first grandson 2yrs old for the day. (back pain). Then it got worst effecting me during working hours, lower back shoulders would come and go, tight muscle pain like a strain or pulled muscle on my right side, doctor prescribe muscle relaxer in October last year, then when that didn't help a MRI, Chiropractor and physical therapy. In a nut shell the Mri was mild arthritis in the t9-L3 areas, two bulging disc lumber area, and mild arthritis but nothing major found. Ok why do I hurt so much and why is it getting worse?? that was in December 2021. The chiropractor about killed me, he was brutal with his cracking technique's, physical therapy was great with the message, stretches and heat packs, but the cold packs and exercise bike was painful as all get out, they kept wanting to strength my stomach muscles, said it would help my back pain. That ended in Jan 2022 as insurance would only pay to so many visits. So now I am having a hard time as things have gotten progressively worse with sitting, typing and standing for any periods of time, as I have radiating pains from my tailbone to my shoulders down my arms to my hands swelling after typing for several hours without a break but I go to bed in pain and wake up in pain from my hips every day that is the one constant that never stops just the level of pain. numbness in my legs feet, my hand not when I first wake up but about 30 mins later for 10 to 15 mins, I can't take the meds prescribe while I am working as they affect my ability to concentrate, but I am finding that I am at a lost for some words at times like a dementia patient would be or confuse the wrong word for something, or just completed can't come up with it at all. spoke to the doctor again ran more lab work ANA test positive this time, ANA Titter 1.80 ANA pattern positive for lupus sle but rheumatic <1 which this still haven't been confirmed. (lupas or RA) so with this background knowledge what am I looking at realistically toward the future. My doctor said I may have to look at retirement (data entry specialist for a living) now for any quality of life with my family and grandchildren as the future will be rough get my duck in roll and file for disability as I am not in the beginning status of this but more in the moderate moving into the severe stages. What does this mean? Was I in the mild stages 16 years ago of Fibro? Went into remission and now it's back with a vengeance?
 

sunkacola

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Hi Kitty, and welcome.

There's really no way to know if you were in early stages and had a remission and so on or not at this point. But of course that's not really the pertinent thing - how you are doing now is far more important.

There are various things I can say - noting that I am Not a medical professional.
Bulging disk can get worse. Or, if not getting worse, just the fact of time going by can make the results from that feel worse, just due to age and the attendant degeneration of everything, and it can be extremely painful at times and not at others. This is pretty typical of back problems, especially in the lumbar area, and may or may not have to do with anything other than your specific physical issue in that area.

When you do work that uses your back you will tend to aggravate that issue, so it is very important to pace yourself, never bend over, always lift everything over 2 pounds with your legs only and not your back, and stop instantly if you feel the slightest twinge. This is what I do (I also have specific lower back physical issues) and it means I can get things done without paying for it with 2 days of pain. It takes me a bit longer to get something done, but I can still get it done a little at a time.

Feeling foggy can be fibromyalgia or it can be caused by the medications you are taking. You don't say what they are, but a lot of meds have serious side effects. the only way to know if they are the cause or not is to find out how you do without them (under your doctor's supervision, of course).

As for what your doctor said about retirement and "getting your ducks in a row", I recommend not worrying too much about that until it becomes necessary. I don't know where you live, but if it is in the USA filing for disability is Not an easy process. Last I heard you had to prove you have not been physically able to work for some period of time (I think 2 years) before you will be considered. And the process even then is arduous, invasive of privacy, and not any fun at all. So I suggest waiting to see if you have to do that or not and avoid it if you can. Just taking regular SSI early is a lot better than trying to get SSDI.

No one can predict the future. Fibro doesn't necessarily get worse. You can work with it and alleviate some of it. There are many, many things you can do that do not involve taking medications that will be very likely to have a positive effect on how you feel and what you are able to do on a daily basis. Many people here will attest to that. You are not doomed to a slowly degenerating condition; this is something you have the ability to treat yourself, to manage, and to live with to the degree of having a normal life even if it is not what it used to be. Trust me on this, I know and so do many others here.

We are here to support you, offer our suggestions and experience. Just ask.
 

kitty_dinozzo

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Jun 8, 2022
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thanks!
I wasn't sure about posting the meds, but they are simple two blood pressure atenolol and losartan, cholesterol ezetimibe, sinus montelukast, menopausal estradiol , silent acid reflux omeprazole, diabetes/weight control Ozempic injection and topiramate, back pain methocarbamol, swelling meloxicam and nerve pain gabapentin, thyroid Synthroid. like that's not enough right! I can't do the CBD, or other prescription card form meds due to my job with the state (usa) and federal guidelines policy are not open book (law enforcement rules still apply). With the state job, I have pension for early disability retirement, if I can't perform my job duties. it's a quarter cut off my regularly retirement at 62 with the years I have in which is 17. I am basically in a nutshell a glorified data entry clerk which is getting harder every day to do with the swelling in my hands, tightness in my shoulders, and this nagging pain in my hips. I start out in the beginning of the day great, but by 1 or 2pm I am done for the day just get so unbearable and I really can't take anything until about 4 for the pain due to the side effect. I work at home most days, but because I am falling behind they want me in the office now one day a week which mean driving 45 mins one way. like thats gonna help me out? no pain meds at all that day. (can't drive on them) I have a riser desk here at the house, so I can sit or stand to work, split key board and stand up mouse, Serta office chair with all the bells and whistle for comfort and footrest moved and adjusts. So what does everyone suggest to help aide with the pain while working? any questions I should ask the doctor when i see them? I also scheduled an appointment with a spine specialist next week to review my L1-L4 disc to see with there is more to this issue also than needs to be addressed.
 

sunkacola

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I can't do the CBD,
CBD, which has no cannabis in it, is legal federally so there shouldn't be a problem with that. However, you know best with regard to your job...I am only suggesting you look closely at it if you haven't already and be sure it includes pure CBD which you can get on the internet or in most health food stores.

So what does everyone suggest to help aide with the pain while working? any questions I should ask the doctor when i see them?
My recommendations for managing fibromyalgia and the pain are all detailed in a post I made, to which I will link below.

Best thing on the job is to move and stretch as often as you can, if that is possible. If you are sitting, that's the very worst thing. Get up every half hour if you can and move around. Even just for one minute each hour will make a difference.

If you reset your whole approach so that your focus is on increasing and maintaining your overall health, you may not need to depend at all on pain medication, which doesn't do anything in terms of the sources of your pain and only masks the pain itself. That is very useful at times, to be sure, and I am not opposed to pain meds! But there are so many other things you can be doing that stand a good chance of reducing your need for those meds.
 
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