Hi everyone, after several years of being told my symptoms were all linked to anxiety by my gp, I eventually went private to see a rheumatologist. Last year I was finally diagnosed with MCTD and Fybromyalgia. It was such a relief ar first because I had thought I was losing my mind... Things have been OK, but just lately I have started to have problems with my eyes and nose (very dry) and, the chronic fatigued has returned along with joint pain in my hands. I should have seen my consultant back in September but had heard nothing by January. I contacted my doctor and asked them to chase the appointment, but they just replied saying the NHS is very busy and to wait. I feel like my health has taken a step backwards, but back to questioning if it is all in my head again. Any advice would be welcome, as I don't think my GP is going to be overly helpful.
Frustrated : Hi everyone, after several years of... - LUPUS UK
Frustrated
I totally hear you! It really makes you question yourself but honestly I think you know yourself better than anyone. Before I was discharged this week I was actually phoning the hospital once a month and my chemist even told me to push them once a week to be seen if I felt that bad.
I have very dry eyes and was told that Hycosan is supposed to be good.
Can you pay privately again for a rhuematologist if you've done it before you should be able to contact that Rhuematologist's secretary direct and ask for an appointment. Sounds like sjogrens with the dry eyes and nose and fatigue. I have very dry snd sore down below (if you're female), trouble swallowing dryer foods, choking, dry mouth, teeth and gums sore and decay. There are many internal issues too like kidney stones. If you're on hydroxychloroquine already then that's great. You can help yourself in the interim by using hylo tears or similar eye drops several times a day followed by actimist eye spray on top. Hycosan night is great for night dry eye. A hot usb eye mask twice a day for 10 mins a time helps a lot and you can see an eye clinic with a good ophthalmologist to see what's going on with your eyes. Wear glasses in dry atmospheres or out walking helps too. I use safety glasses which are cheap and don't let the wind in too much. I hope you can some relief whilst you wait for a consultant. Xxx
I was thinking about going to see him privately again. The annoying thing is, he me on his NHS list so I didn't lose contact with him... Yes, on hydroxchloroquine, Fluoxetine and Amitriptyline, also started with Hycosan eyedrops. The last time I saw him, which is a year ago now, he asked me about my eyes but I wasn't having an issue with them at that time. And, to be honest, I never gave my dry nose a thought because I'd had that for years. I've only just started to join the dots... I've been plagued with sinus infections this year, meaning having time off work which hadn't gone down well. Lots of bits of other stuff going on, sore mouth every other week to a point where I dread cleaning my teeth. Trying to stay positive, but really don't feel like I can go to work, however I will, I'm a teacher and GCSE's are looming so need to be there for my students. I know you are right, I'll get on the phone tomorrow xxx
Yep even before my diagnosis of sjogrens and lupus I had years of constant fatigue. With our immune system constantly fighting itself its no wonder we have fatigue. I have to rest every day and there is no way I could work full time. I'm 52 (feels like 72 with fatigue!). I also had the 'your stressed or making it up' from many doctors over the years or it was my past illnesses making me ill still. I knew my body was shutting me down to rest and that meant something was still going on, my body was fighting something. Try to rest when your body tells you, in my experience, you push it and you'll pay more the next day or week for it. With rests every day you can get by. So hard when you have a stressful pressured job but many of us have had to rethink work as the fatigue never goes or gets better. At least you are on hydroxy but you need at least two yearly, if not yearly, thorough eye check ups from an ophthalmologist as eye damage is not uncommon with hydroxy. If you go regularly they can hopefully spot it early. I'm on the waiting list too for nhs rheumatology but its been five months and not a word. I was told do not chase them and an appointment will come when it comes. That's why I am still private alongside it as my health can't wait sometimes. I have not found a nose medication but Pilocarpine tablets prescribed for Sjogrens give you moisture in most places so my nose is not so bad because of it. Try the eye mask though. A good usb one from amazon is about £20 and a complete lifesaver when my eyes are sore. Sounds silly but don't forget long blinks or shut your eyes for a few seconds to redistribute your tear film over your eyes for when you're on a computer or watching tv. A good overall check up with an eye clinic would be worth while if you can afford it, to have a good eye mot though. I go to Matrix eye clinic in Wroughton, Wiltshire. Look up their website and see what they do and prices and see if there is an eye clinic near you offering the same sort of thing. I have found an optician really isn't enough they don't have the ct scanners and other equipment usually. I do hope you can get on top of things but seeing a Rheumatologist again is a must it seems. I hope your pupils don't cause you too much stress, well done for teaching I'm guessing its hard but rewarding. xx
Hello…I just want to say that it REALLY isn’t in your mind…having struggled for decades in similar circumstances, I have such empathy with you. I went to a rheumatologist 22 years back, after having had CFS in the 80’s. It was a repeat performance of what you describe: the hopefulness that one might be given a diagnosis and thus some treatment, only to have a professional look down their nose and dismiss the symptoms. I can tell you a few things which may help, but obviously I’m not a doctor! I had dry eyes and on occasion one eye stuck shut with inflammation…not dry enough, the Rheuma told me! I used hypromellose drops for years, but of late have found colloidal silver gel much more use. Nose has been dry, bleeding and incredibly painful - the above, plus a well-known camphorated exotic sounding balm around the nose at night. My GP said I had MCTD and Sögren’s ( pain, exhaustion, etc., plus patches of bright red itchy skin which then scarred) but he was wary of the ‘consultant merry go round’. Last few years I’ve taken high dose Vit.D 3, from a supplier linked with university level research. I believe this, plus avoiding all chemical pollutants in the home that I can ( aerosols, cleaning products, cosmetics) has helped a lot. I also have hypothyroidism, so that fits with autoimmune, I guess. Remember: you are not crazy; they, who should be able to help you, are often just not doing their job!
Hi Mctd
I am sorry you are having such a difficult time. Does your hospital have a rheumatology specialist nurse or a rheumatology helpline? They may be able to help in the interim. Alternatively you may be able to speak to contact your consultant's secretary at the hospital, who may be able to indicate when you are likely to receive an appointment.
I have added below links to some of our publications/blog articles which talk about the symptoms you have mentioned. I have also added a link to a blog article regarding getting the most from your medical appointments, which gives tips on how to prepare for the appointment when you do get one:
lupusuk.org.uk/wp-content/u...
lupusuk.org.uk/managing-fat...
lupusuk.org.uk/pain-managem...
lupusuk.org.uk/getting-the-...
lupusuk.org.uk/wp-content/u...
I hope you will find the above useful.
Kind regards
Alida
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