UTTER FRUSTRATION

[ScottishGirlGla]

I have an understanding GP who in the current restrictions I am grateful for. I spoke to her on Tuesday regarding current issues experiencing on phone appt. as there are no face to face and she got me in yesterday for a blood test. That was a little frustrating in itself as it was only one blood (assuming ANA) rather than panel. However she has referred me back to Rheumatology on my request as for last nine months have been experiencing increased bilateral arm pain. This pain feels like the extreme muscle pain you get with flu only its been getting a lot worse in level over these last 9 months. Its now becoming difficult to sit self up in bed, put a bra on, hoover etc I have had clear auto immune symptoms for last 6 years and i just feel that my bloods betray me every time and the rheumatologist tell me I'm fine when I am very not. As with the last few years i am getting flare of symptoms - headaches, chest pain, increased muscle/joint pain, extreme lethargy, vasculitic type rashes on legs, nasal sores.

Had 3 early miscarriages and endometriosis before that which are all suspected to be possibly autoimmune related. Since 2016 had anti cardiolipin antibodies which now negative and have lupus anticoagulant instead - on aspirin. Low vitamin D level also and on supplement. My 2 kids also have ASD which according to research is common in kids with mums with auto immune.

Just not sure what to do now if rhumatology won't see me. My arm pain is getting unmanageable and at 47 thats not acceptable.

[CecilyParsley]

I am so sorry that you are experiencing such debilitating symptoms. I totally understand your frustration. I have had pain constantly in my left shoulder radiating down into my thumb and little finger. I struggle to do up my bra or lift a top on and off . It feels like a sciatic pain but when I touch my muscles they are extremely tender. I hope you get to see a Rheumatologist who can help you . Good luck xx

[ScottishGirlGla in reply to CecilyParsley]

Hi Cecily, not sure what to do re: rheumatology but will wait till get blood test result at end of week and go from there. Its just so frustrating that when you wait months to see a department and don't have the particular symptom that pertains to at time of appointment they just write you off and send you away.

[CecilyParsley in reply to ScottishGirlGla]

I know, I seem to always complain of something and it is never there to show when you finally get there. Mind you there is nothing to see with my arm and shoulder just restricted movement and I yell a lot. I would definitely tell your Rheumy and hopefully he can give you some advice. Good luck XX

[ScottishGirlGla in reply to CecilyParsley]

I don't have a rheumatologist. I saw one in 2016, and this past November but since my bloods let me down, - only low vit D, weakly positive ANA and weakly positive lupus anticoagulant but all else normal they won't take me seriously and they won't see me back even though my GP referred me

[CecilyParsley in reply to ScottishGirlGla]

That is shocking. I am so very sorry. Despite being diagnosed, undiagnosed and repeated several times I have never been refused to see a Rheumatologist. Are you going back to your GP to get advice? Maybe they can refer you to a physiotherapist or other specialist. Xx

[KayHimm in reply to ScottishGirlGla]

The reason the rheumatologist may not see you again is that they may feel your GP can repeat blood tests and monitor symptoms. It doesn’t mean you are not being followed. I think in the UK the guidelines for referral and re-referral are probably clearly delineated. There is a shortage of rheumatologists and they may expect the GPs to watch patients like you for further signs.

It sounds like you are in an unclear category right now. Would you consider getting a private consult at a lupus expert. If I were in your position, I would want to hear from a rheumatologist how they viewed the positive lupus anti-coagulant test and weak ANA in the context of your other symptoms. Do they think it indicates you are showing signs of autoimmunity?

Keep us posted on how the appointment goes if your referral goes through.

K

[ScottishGirlGla in reply to KayHimm]

I take that point. However my muscle pain especially in both upper arms has been increasing for the last 10 months, only getting worse to the point i can't put on a bra without help. I can't actually see ANY doctor due to Covid restrictions at the moment so thats not helping. The rheumatologist i saw last November even with all the photographic evidence, list of symptoms etc refuses to even consider auto immune though everything i have read points to it. It may not be lupus but with increasingly debilitating symptoms it must be something

[KayHimm in reply to ScottishGirlGla]

I agree the increasing pain is significant and good you reported it. But it may mean the GP should repeat tests, as he did, and consider other tests that would give information. The information can be used to refer to a different specialist or re-refer to rheumatologist. I was initially in your situation years ago when there were no restrictions in the US regarding seeing specialists and I was told I would be « watched. » It is not being dismissed at all.

Can you ask your GP what he thinks is going on? The rheumatologist may have commented on your positive labs after your consultation. If he repeated the ANA, it sounds like he is not convinced there is not an inflammatory process going on. These tests fluctuate.

Hope you move forward with this.

K

[freemare]

Do you live near any WiFi towers or boxes on poles, 4G or 5G?

I am in extreme pain all the time however mostly from around my waist (lower back) down. Excruciating at times. Hips, pelvis, legs, back and feet. I’ve had neck pain all my life but since menopause it’s decreased a lot and I take a muscle relaxer at night and that helps tremendously. Hardly have any neck pain unless I strain it by working too hard or lifting. I have osteoarthritis, bone spurs and osteoporosis in it too. Still doing okay. But I have been reading about the effects of 5G and 4G on our bodies and sometimes the symptoms are flu-like and flu-like pain etc. so nothing is going to show up in our bloodwork even if we are having debilitating symptoms.

Not saying you don’t have any other conditions. I just think if we are in contact with these frequencies as well as our phones and computers and TVs etc, it just exacerbates them. I am guilty of being on my phone at night and falling asleep with it on my body (that is if I don’t drop it on the floor, and it hits my metal air grate and makes a huge racket waking everyone up!!) and it’s not good for us and is even cancer causing.

My goal is to reduce usage of anything electronic like that, and especially at bedtime.

Also are you getting proper rest at bedtime? I know we pain warriors end up awake most of the night and our circadian rhythms are off and our bio clocks are not in sync with the earth and the way we were created to follow the natural ways of being awake and productive and being at rest and asleep. That keeps our bodies from regenerating at night. Our livers don’t detox. Our bodies don’t heal. So it’s very important even tho a simple enough task, it’s hard to do when you’re in pain. These are just a couple of thoughts. Make sure you take a good Vit D supplement daily. My rheumatologist told me to take 2000-5000 a day in winter. I do not retain the nutrients if I don’t consistently take supps. Also have you ever heard of Leaky Gut? It causes a lot of problems consistent with autoimmune disease symptoms.

As far as the localized arm pain, have you seen someone that can X-ray or MRI your spine and neck?

If you have a bulging disc or anything like that it can cause arm pain and numbness etc.

I was 48 when I had my physical “breakdown”. I’m 58 now and I’m going to change my diet so my body can heal what it’s able to heal. And change sleeping patterns. Those are two important healing factors. And keep my phone away from my bed and turned off! I hope you get some relief.

[MissusTee]

Sounds to be like you might have a form of myosotis.

[ScottishGirlGla]

That could be something to look into BUT with rheumatology refusing to see me and unable to actually see GP at practice as only doing telephone appointments there is no way to actually diagnose that