Connective tissue disorders

[celestialbows]

following years of chronic pain and multiple symptoms I have just had some rheumatism blood tests back and have a connective tissue disorder. The GP couldn't be anymore specific and could only say it's possibly fybromyalgia or lupus but it could be any number of things. He is making a referral to the rheumatology department in the hospital. I am in the Uk.

I have tried googling but the disorder covers a massive range of conditions so I almost feel it's not worth trying to find out more until I have been to the hospital.

i have scoliosis and have just been diagnosed with hypermobility and borderline hypermobility syndrome.

i am seeing a specialist physio who says that my pain receptors aren't working properly and that some of my muscles have 'switched off' possibly to compensate for my scoliosis.

I am 41 and have two children, my symptoms really got bad in my first pregnancy.

can anyone tell me how it works after initial diagnosis and referral?how long does it take? what happens next?I just don't know where to start and can't bear the waiting!!! Thanks so much

[celestialbows]

Apologies I didn't get a chance to say hello!

[mrsfox]

Hi - I don't have direct experience of this, but my sister has mixed connective tissue disorder and once it was diagnosed I think it was a 'wait and see' situation before they put her on any drugs. It seemed to take them quite a long time before they tried a steroid shot, which helped a bit but not enough, and she's now on methotrexate and doing much better. Sorry that's not a huge amount of help - I'm sure some people with more experience will be along soon.

[celestialbows]

Thanks so much mrsfox, it's a Start! I had never heard of CTDs until Monday! I can't glean whether I need to worry or not!

[Meanderer]

Hi celestial, in a similar position but for longer and a bit more knowledge maybe...not necessarily a need to worry, it's a bit of a non diagnosis really, there's something up with your connective tissue but they don't know exactly what or why or what to do about it. There are loads of related disorders and my GO said unfortunately you often need to be at the point of feeling fairly poorly before they are able to diagnose it. I don't even really have a proper diagnosis, except hypermobility syndrome. I was told it's really important to get good quality sleep and enough of it, or it could develop into fibromyalgia. Also to exercise to strengthen core muscles, Pilates and swimming and cycling. From my own research and knowledge it's worse exploring gluten and casein free diets, gluten first, especially if you have any digestive discomfort IBS type symptoms, because connective tissue lines your gut and it's more vulnerable to inflammation and long term could lead to autoimmunity, which I have some markers but no diagnosis. I also get a butterfly rash over my cheeks which looks like a lupus rash, but don't have enough other lupus indicators to be diagnosed with that.
To summarise I think I'd say, look after yourself, healthy diet, sleep, exercise, manage your stress levels. You may not get any worse, but if you do, keep clued up and don't be fobbed off by health professionals, use online forums and Facebook groups to get ideas but treat them with caution!

[Meanderer]

Oh and I take glucosamine supplements and eat loads of sulphur contains veg like broccoli and onions and cabbage..... Sulphur is important in collagen structure.

[Meanderer]

Oh and consider trigger point massage for areas of chronic pain...look it up.

[Troubledtimes]

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[celestialbows]

Hi meanderer thanks for your reply and for the information. Apologies for not Responding sooner, I have been away and unwell!
Your comment that 'it's a non-diagnosis' was exactly what I was dreading but had a feeling it might be the case.
I have battled so long with pain, exhaustion and stress, I wanted something to call it, a label to prove to myself and everyone else 'see, I'm not making it up, I'm not a hypochondriac, there IS something wrong!
I have a hospital appointment in December with rheumatology wherein presume they will do more tests?

Do you take any medication? Do you work? How does it affect your life? I already feel that my lifestyle is heavily compromised, I feel like an old lady.

[EthelDorothySusan]

www.mumsnet.com/Talk/general_health/a1894504-Does-anybody-know-anything-about-Ehlers-Danlos-Syndrome#42627049

[Lonecatwithkitten]

I have mixed connective tissue disease. Currently I am good so not taking any drugs, even good I produce no tears or any mucus anywhere in my body. Bad I have terrible pain main focuses are elbows, thumbs and knees I take plaquenil (hydroxcholoroquinine). I longest period of continuous drugs has been three years other times just 6 months. I also have pernicious anaemia and coeliac disease so I have cross over with tiredness symptoms there.
When a bad period hits it can sometimes be difficult to work out which disease is responsible. I always give myself a B12 injection first as it can't do any harm, then start taking ibuprofen every 6 hours to reduce the inflammation in case it is a viral arthritis if things haven't improved after 10 days then I start the plaquenil. It is always my last resort as it is an immunosuppressive drug.
My very worst symptom of all is not being able o produce mucus when I have a old as I just get the most awful sinus pain then.
Arthritis UK has loads of great information about all these diseases.

[Lonecatwithkitten]

Oh yes mine started in pregnancy too, this is very unusual as normal immune mediated disease improves in pregnancy as your immune system is modulated to allow the pregnancy to persist.
I have been advised against more babies (not that I wanted any more) in case it causes a drastic worsening of my situation.

[celestialbows]

Oh gosh lonecat, non production of mucus is a new one on me! I did take a lot of pain relief during the pregnancy due to the horrific spd type symptoms which probably didn't enhance my immunity!
Is the b12 injection something that doctors have given you? I couldn't imagine injecting myself, I'm such a wuss!
After a long period of infections and antibiotics about 12 years ago I developed allergy to NSAIDs so during all this pain I have been unable to use brufen, aspirin or voltarol type drugs. I'm sure that this hasn't helped. I was using opioids but was starting to become immune just needed more and more than the recommended dosage also whilst breastfeeding so in the end I weaned myself off them and have been (mis) managing my pain relief ever since.

[celestialbows]

Oh gosh lonecat, non production of mucus is a new one on me! I did take a lot of pain relief during the pregnancy due to the horrific spd type symptoms which probably didn't enhance my immunity!
Is the b12 injection something that doctors have given you? I couldn't imagine injecting myself, I'm such a wuss!
After a long period of infections and antibiotics about 12 years ago I developed allergy to NSAIDs so during all this pain I have been unable to use brufen, aspirin or voltarol type drugs. I'm sure that this hasn't helped. I was using opioids but was starting to become immune just needed more and more than the recommended dosage also whilst breastfeeding so in the end I weaned myself off them and have been (mis) managing my pain relief ever since.

[celestialbows]

I do pilates once a week and very occasionally swim and cycle but I am so lacking in energy or motivation so am starting to put on weight. The tiredness makes me want to eat crap all the time!

[Lonecatwithkitten]

The B12 is for the pernicious anaemia most people have it done by the nurse, I couldn't be bothered with the faff. So I persuaded the GP that as I am a vet I could do it myself.
The tiredness does get to me sometimes, but I just do my best.

[celestialbows]

I have some iron tablets left over from pregnancy as well as hops tablets which I believe are high in b vitamins, I can't remember why I bought them, I wonder if it's worth taking them to give me a boost? I I don't think my GP is going to help me any further until I get my hospital results. My appointment is in December so I guess I'm unlikely to get any treatment until next year?