Symptoms Progressing - Should I talk with my primary care doctor?

Hi everyone,

Over the past 2 or 3 weeks my symptoms have been getting noticeably worse. The worst ones have been:

Extreme fatigue (like, difficult to function levels of fatigue)

Tingling, mild numbness, sensations of itchiness and some burning in my face, lips, tongue, arms, hands, legs, and feet

Extremely dry eyes

Poor cognitive abilities

Ongoing headaches and neck pain

Joint pain, especially in my legs and very bad at night

Muscle aches and pains, almost like growing pains

Intermittent poor balance (especially in the mornings, will strike randomly during the day, usually accompanied by severe muscle pain)

A feeling of heaviness throughout my body, especially head, arms, and legs

Poor overall stamina

Intermittent hand tremors

Constantly feeling either hot or cold

Etc.

I am back at college now and am struggling greatly to succeed in my classes due to all these things. I can't tell if it's a flare-up, weather related (very cold and snowy here), my diet (dairy??), stress, or something else. Would it be worth contacting my primary care doctor to see if she has any ideas on what to do? Due to not having a diagnosis, treatment options feel so limited right now. I'm not sure if there is anything anyone can do at this point, or if I just keep fighting and hope I'm not forced to medically withdraw again? I'll flare-up for a few hours, then dip back down to mild symptoms, then flare-up again, then randomly feel pretty good for a few hours...it's a very weird pattern.

[dg70]

If ever anything noticeably changes to my condition I contact my Rheumatologist via her secretary. She then usually sets me up with an appointment. You could see a GP too but unless they are very experienced in autoimmune I find the advice is often either here's something you can take or contact your Rheumatologist. So generally I go straight to her in the first place. This may not work if you are NHS though as I see my Rheumatologist privately so I have her private secretary as a point of contact. It may be you go through your GP when you're NHS. Sounds like you need to be seen anyway. Fatigue is one of the worst things to cope with, had it for years and I can pace myself day to day and rest as I have my own business. I can't imagine what it's like if you're still at college. I find the more I stretch my brain the quicker I get exhausted and have to rest after an hour or two. Even talking to people for long periods wears me out. If you're not resting enough your body can't cope with the internal struggles of your illness and keeping you going so it shuts you down to reboot. I've never been able to ignore fatigue or it makes me sicker if I try and push through. Maybe this is happening to you? Perhaps speak to your tutors about your struggle and maybe they can extend deadlines?

[Hidden in reply to dg70]

I thankfully have accommodations in place already, but I always feel guilty using them. I need to start using them more, as they are in place to help me.

[dg70 in reply to Hidden]

Never worry about contacting your Rheumatologist if things change or you're worried. What's the worse they can say?

[KayHimm]

BroomlynyeDeanne-

It has to be hard to continue your studies without proper treatment and a diagnosis. Even someone with a fibromyalgia diagnosis gets help with physical therapy, life style changes and possible medication. That illness is not well understood. Since they think you likely have some type of autoimmune disease, you might want to advocate for a trial of an anti-inflammatory medication. I would definitely call your GP and if I had your symptoms would want to see a neurologist with familiarity with autoimmune disease.

Hoping for a break through for you.

XX Kay

[Hidden in reply to KayHimm]

My primary doctor put me on Plaquenil, but I think it's too soon to know if it is working yet or not. We have been discussing me going to a research hospital next. For now, I believe whatever this is is just simmering under the surface, enough to cause havoc for me, but not enough to show up on blood work. We continue down the path of autoimmune due to the ANAs and symptoms (1:640, 1:1280, greater than 1:1280, 1:640 as a recap), but at this point I really don't know. I've spoken to my doctor about fibromyalgia and CFS, but our conversations have never been deep about them.

[Smudge4465]

Sorry to hear you are suffering so much.

Its very easy to become disillusioned and frustrated when feeling very unwell and desperate. Twice I have been told by my consultants ‘why didnt you communicate this earlier we could have helped you!’ So my suggestion is ‘dont be frightened to ask your clinician’ whether GP, rheumatologist or lupus nurse. What do you have to lose? A diagnosis is the way forward.

Keep going, and very best wishes for a positive outcome.,