LUPUS UK
21,400 members16,930 posts

MIXED CONNECTIVE TISSUE DISEASE

After 10 long years and many many diagnotic tests and issues special blood work finally showed mixed connective tissue disease (ok so I'm not a total hypochondriac? ? As I'm sure many around me thought..so I don't know if it is lupus or not my question is has anyone had really bad upper arm muscke tightness all of a sudden for a few hours? Over that last few years my muscles tighten up very easily but this was worse than usual...the next day my right arm felt super sore from it (naproxen and heat helped a little ) the last two to three weeks I have been in a "flareup" of some sort...absolutely exhausted and extremely emotional (mixed with not knowing what is going on with my muscles is scaring me) hard to concentrate and process what people are saying at times...my regular blood work recently (Esr normal and TSH normal) I was concerned about my thyroid because I have crying alot lately but they didn't do a t3 or t4 or a ck for my muscle issues....should I push to have these tests done even though my other blood work is fine? My feet sometimes are so foot and recently getting burning and tingling in the feet...it's been such a long journey to get to this point and I'm just tired of feeling like I'm going crazy because blood work doesn' show anything (yes I'm waiting for at least 6 months to get a specialist appointment ) ...I already have nerve damage /numbness in both arms and my tongue and right side of face I'm just worried about this progressing anyone else have similar issues?I have too many symptoms /issues to list but feeling like it is getting the best of me..I know with a little rest I will get over this bump..things can always be so much worse but I'm worried about being healthy for my kids

11 Replies
oldestnewest

I’m so sorry you are going through all this. Believe me, many of us “feel your pain”. It does take time to get a correct diagnosis but please know that you are not alone. I am still going through getting diagnosed correctly. Just last week I was told that I have secondary Raynaud’s. My feet turn blue/purple/white and red. My lips have also started to turn purple and just the other day my hands started to do the same thing.

Being diagnosed with Lupus and Fibromyalgia have taken a toll on me along with my family and friends. But knowing that I have their support along with everyone here has made me a WARRIOR! You will become a warrior also. Keep your chin up and know that you will get through all of this.

1 like
Reply

Thanks you for your kind words and good luck with everything

Reply

Firstly I am so sorry your feeling so over whelmed. And too rightly so! You have all these different things going on that aren't normal. If it was just 1 or 2 symptoms you could ignore it, but when it creeps into everywhere it's worrying when you don't know WHY am I feeling like this?

Can you tell me more about the tightness in your arm? Is it a muscle spasm or does it feel like someone has a tight grip around your bicep area?

Biggest of HUGS

🌻🌻🌻

Reply

Thanks so much..I work front desk in in a hospital so it can get a little stressful too at times so that doesn't help but it keeps me going but nit sure if I can do full time if I continue to feel like this ( I am hoping it is a flareup and things will improve at some point)..as for my arms if doesn't feel like a strong cramp ( the way a charla horse feels)but more like hardening of the muscles as if I was carrying something really heavy but this last time it was really tight feeling

Reply

Hi there. Yes I have many of your symptoms and my hard won diagnosis’s to date have been Hypothyroidism, RA and Sjögren’s - the latter being the worst and presenting very like MS for me.

MCTD is a condition of itself just like all the others eg Lupus, Sjögren’s. A member of this community has it with probable Myositis and if you haven’t already you could read his recent posts. You just search for Whisperit on this community in the search box. He might respond here anyway.

Myositis could well explain things for you so yes I would definitely push for your CK to be tested.

If you are unable to get your T3 and T4 tested by your GP then you could always get both done yourself with Blue Horizon or other self testing kit quite affordably I believe? Lots of people here get dismissed when their bloods don’t support their symptoms so you aren’t alone having a relentless battle on your hands - many of us can relate and sympathise.

Reply

Thanks so much I appreciate being able to talk to those who understand. .I will push having those tests done thanks

1 like
Reply

Hi Sandy, I am so sorry to hear you're going through this. I too have Mixed Connective Tissue Disease and I was diagnosed last December, and I find myself being put in the same category as 'lupus', as my symptoms mimicked lupus greatly.

I found myself diagnosed quickly after a flare (co-incidence the flare popped up a fortnight before the appointment I'd waited nine months for!) and the emotional toll of the flare, the symptoms and the diagnosis made it very difficult to cope with.

I have nothing to really give for with advice other than to relax, spend time with those you care of and giving yourself some TLC. You may have some luck getting some answers with the tingling however, if you present those as separate issues, rather as one big picture. You might get some luck by addressing the face numbness and tingling with maybe a dentist or an oral medicine specialist.

Do you have a sympathetic GP? If so, maybe booking a long appointment and addressing all your concerns may help.

All the best, Amy

1 like
Reply

This is a good point AmyJ3 - I’m just about to see my oral med consultant for review and have been so focussed on pain in my feet and legs that I’ve only just clocked that the usual debilitating burning pain has disappeared from my mouth and all is worsening numbness and tingle. She is great because she knows so much about the systemic side of my Sjögren’s - much easier to speak to than my neurologist. Obviously I won’t focus on my feet but I’ll mention them because she views the rest of the body from the perspective of a specialist in oral medicine.

1 like
Reply

Thank you! Just nice to talk to those who understand

Reply

Hi Sandyfa,

Welcome to the LUPUS UK HealthUnlocked Community! We offer a free information pack which you may like to download or request here: lupusuk.org.uk/request-info...

Mixed connective tissue disease (MCTD) is an autoimmune disease that is considered to be a cousin of lupus. We published a factsheet on ‘LUPUS: and Mixed Connective Tissue Disease’ which discusses symptoms, complications and the treatments available for MCTD. To read this factsheet, please click here: lupusuk.org.uk/wp-content/u...

People are likely to experience a flare of their symptoms when disease activity is higher or perhaps when they’ve been exposed to certain triggers i.e. experiencing a skin rash after being in the sun. it is possible for people to experience periods of remission whereby their signs and symptoms are reduced; periods of remission vary from person to person.

Peripheral neuropathy is a common nerve problem due to damage to small nerves of the legs and arms. It common causes gradual onset of decreased sensation in the feet sometimes follow by similar problems in the hands. Sometimes the person will notice a burning sensation or “pins and needles” as a result of this. We published a factsheet on ‘LUPUS: and the Feet’ which you may like to read here: lupusuk.org.uk/wp-content/u...

Have you tried ringing the specialist’s secretary for any cancelations which you may be able to fill? You can ring regularly to see if you can get an appointment for a closer date.

Please let us know how you get on, wishing you all the best.

Reply

Thanks!

Reply

You may also like...