In despair feeling lost and very low 😔

[Pink-y]

I have had ‘fibromyalgia’ for years, but over the last year things started to change. My fatigue has taken over and I am in constant pain. I am a single Mum of 3 kids age 10 and under and I have so much guilt that I am not ‘present at present’ for them.

About 2 months ago I tested positive for Lupus with dilute VVT, but not ANA. Lupus was suspected due to discoid rash on back. A recent MRI has shown an unusual amount of white matter for my age, plus nodules on my thyroid and disc dehydration in neck.

My Rheumatologist has not diagnosed me with anything just yet, and as before, is suspecting MS due to symptoms and brain scan (symptoms head to toe). My GP wants Rheumatologist to take control, but he’s passing the referral to neurologist etc back.

I feel like no one will take ownership of me and my symptoms, and in the meantime, I am signed off work with no treatment plan in place.

I am having real dark thoughts about carrying on with life (I have no plans) as my quality right now is so poor.

I am meditating, doing yoga, using cannabis oil, seeing a chiropractor and watching movies and listening to music to stop me thinking.

I can see me looking back in the future and actually understanding how low I was, and this is a great thought, but I cannot feel it even remotely in sight at all.

Could this be MS, LUPUS, thyroid disease or all of the above. I don’t want any and really don’t care now what it is, I just want a treatment plan in place in which allows me to fully function as a human being, Mum, colleague etc.

Apologies for the MASSIVE moan, but I’m starting to withdrawn from talking to my nearest and dearest.

Any advice, help, support welcome.

Many thanks 🙏🏻

[baba]

Sorry you are feeling so poorly.

When you say you tested positive for Lupus do you mean "Lupus Anticoagulant". If so there is more information here:

nhs.uk/conditions/antiphosp...

ghicworld.org/

healthunlocked.com/hughes-s...

Blood tests

1) anticardiolipin,

2) beta-2 glycoprotein I (β2GPI),

3) lupus anticoagulant.

They need to do these tests twice, 12 weeks apart, to exclude false positives.

It is often associated with thyroid problems and also sometimes mistaken for MS.

I hope you get help from your doctors and keep talking to your friends.

I think you will also get lots of support on this forum.

Best wishes.

[Roarah]

As you await a physical diagnosis please speak to your gp about your “dark thoughts” and see a professional who is able to help you address your mental health immediately. Dark thoughts and depression kill far more people every year than either lupus or APS.

Treating my mental health has helped me not only deal with my lupus and post stroke APS symptoms I honestly believe my better mental status is responsible for my present remission. Please speak to your doctor ASAP about your desperation. Good Luck.

[MrsMarigold]

Hello Pink-y. I’m so sorry you feel this bad. I was you 20 years ago with no diagnosis

And young children. Feeling guilty for not

Being present with them. Since you want answers and “ someone to take charge”

It’s difficult but you have to take charge.

I agree some mental health, counseling

Would be a good start and give you a chance to unburden emotions. Then phone calls to your Drs. for answers. I understand

Needing answers for a treatment plan. The

Process takes a long time, sometimes;most times. Sending prayers, Titters

[Cowsaresweet]

As others have said do take action on your mental health. It may seem counterintuitive but doing small amounts of moderate to vigorous exercise ideally outside is important. For example, rather than having a coffee with a friend go for a brisk walk, even better if you can build it in to your day, so walk the kids to school. One of the best treatments for mental health is exercise outside and ideally with other people.

[svfarmer]

Hi Pinky I’m so very sorry that your feeling so very low - I too was a single parent to 3 boys all under age of 7 so I know exactly how hard it must be for you - please you must not feel guilty , they love you no matter what - are you close to your family as I would reach out to them and tell them exactly how you feel. Please also make an appointment with your GP regarding your mental health, there are lots of things that can help you .

Your life will get better once you have a diagnosis and a treatment plan - I wish you all the very best xx

[Hidden]

You can take your self to A and E and ask to be seen by mental health team, they were brilliant with my brother, after he only got phone consultations from 3 Gps, they offer counselling at home, social worker, occupational therapist also give you links to support groups etc, hope you get the help you need soon x

[CecilyParsley]

Hi Pinky, I am so very sorry that you feel so low but I am not surprised. Ill Health, fatigue and pain drag you down when it is constant. I agree with everyone here that you really do need to tell your GP how bad you feel. There may be a wait for services but at least they can put them in place for you and prescribe something that may help too. Personally I am waiting for my third lot of counselling in the 12 years I have been sick. Chronic ill health can be relentless so you need to be kind to yourself. Let your family know if you can so that they can offer help and support when needed. Whatever your diagnosis you need some help and support right now. I sincerely hope that you can reach out and get it xx

[Hidden]

Talking to the Samaritans saved me once. Nothing to lose so please talk to someone 🤗

[KayHimm]

Pink-y,

You have had great responses from others regarding emotional support. I think you also need more support and clarification from your doctors. My heart really goes out to you. My cousin with lupus has a daughter who went through a similar process as you. It was devastating for the family - a long wait to final diagnosis.

What I have learned is that these illnesses can present very much the same early on. So it is a huge dilemma for doctors. The medications for one can make the other worse. This is a case where they usually wait until they are certain of the diagnosis to start treatment.

Please ask your doctors to explain the situation to you. Tell them how you feel about being passed from doctor to doctor.

I have low level CNS involvement. Though I see a rheumatologist, the neurologist really deals with these issues, orders the scans and decides on treatment. I think you will be fine with the neurologist right now. The rheumatologist would likely insist you stay with the neurologist for observation.

Bless you. This is a very difficult situation. You will get diagnosed. It may take more time. There are people on this forum who have had your same dilemma. They will be a big help.

Best of luck.

Xk

[MusicalFurbaby]

Pink-y, so sorry to hear abut your troubles, it’s so stressful living with this stuff! First of all, good on you for speaking up on this forum about the dark thoughts. Those kinds of thoughts thrive on secrecy and silence, so by speaking up, you are already heading in the right direction. Please do share with someone in your life as well, it can be a professional or friend or loved one, as long as you are not alone with this. And people on this forum can definitely relate to dark thoughts, me included!

Second, you mentioned white matter hyperintensities. I had those come up on my MRI this year, but apparently my number of WMH is pretty normal for my age. So if you have more than normal, you need to speak with the neurologist about this. They can order other tests too, which can rule out things like MS. So that’s your best bet.

Third, I don’t know much about MS, but I do know they use both brain and whole-spine MRIs to diagnose. Have you had a whole-spine MRI? MS usually shows up as lesions on the spine, in addition to the WMH in the brain. Your neurologist can order a spine MRI, as well as other memory and brain and nerve tests. They can help you build up a complete picture of what is really going on.

With respect to the thyroid nodules, I don’t know anything about those, but I imagine there are blood tests and scans that can be run to give more information. It sounds like you need information at present, so definitely take these questions to your GP and specialist appointments. They can arrange the right referrals and tests for you.

And in terms of ownership, my rheumatologist will sometimes pass primary care to another specialist when it’s worth investigating something specific. My rheumy has passed care to neurologists, haematologists and endocronologists before. The important thing is for those specialists to then inform the rheumy of the treatment plan and keep them—and your GP—in the loop. Ultimately, the GP is the one who coordinates all the specialists and treatment plans.

So what you’re going through is not uncommon, but it is super frustrating! Please continue to share on this forum, we understand what this is like and we’re here for you.