Hi, I'm new to this site and it's taken me a week or so to summon the courage to actually write something. I started to feel unwell last October, it started with sharp pains in my joints, sometimes the pains just spread throughout my whole body, I wondered what was happening to me, I may be 47 but I'm a fit and healthy lady that goes to the gym 5 or 6 days a week. I also started to have constant muscle ache in my back, shoulders and neck and the most debilitating thing was the tiredness.
I have also suffered for years with migraines that usually last around 3 days. Around the same time I get a migraine I also get a burning sensation on my skin, I can wash my hands or have a shower and it feels like the water is burning/stinging me, almost the same sensation as when your hands are cold and you put them under hot water, it's unbearable. When I mention this to ANY health specialist they just look at me with a blank expression and say: "no, never heard of that before." That may be the case but it's happening to me and you're making me think I'm crazy!! I was also diagnosed with vertigo which a specialist linked to my migraines, it was very severe in December 2013 but thankfully doesn't happen on a regular basis anymore.
Anyway I digress, as a result of the pains in October I went to see my doctor, I've subsequently had 3 lots of blood tests and all have resulted in weakly positive ANA in a low titre and La antigen (?). I have seen a rheumatologist who, to my face said it was Lupus but then his follow up letter said that I had a mild form of connective tissue disease. My GP said it was too early to tell and it could be Lupus or Fibromyalgia. The rheumatologist gave me injection in December which helped with the joints but not the muscle pain in my back. The joint pain has since returned so my GP has started me on a course of steroid tablets, I started on 6 a day, reducing the tablets by 1 every 4 days, I'm now down to 1 tablet a day and I'm due to finish tomorrow, and the joint pain has started to return. Oh I nearly forget (that's another thing that keeps happening - brain fog and confusion) my rheumatologist has said that I don't have rheumatoid arthritis.
I'm seeing a Osteopath for the back pains, I had my first treatment yesterday, and he used cranial osteopathy, I knew I would feel worse before I feel better, I'm just keeping my fingers crossed that something eases the pain. I was given codeine for the pain but it doesn't really help and it makes me feel like a zombie. I take amitriptyline and that enables me to get a good nights sleep, that said I could sleep the day away given half a chance.
As I mentioned earlier, I was constantly at the gym but these days I can't even drag myself there, I've put on 8kg in less than 6 months, probably due to not going to the gym, taking the steroid tablets and the fact that I'm eating slightly more than usual, it could be the tablets but I'm craving carbs, either that or I'm just comfort eating?
All the uncertainty, pain, tiredness and the fact that my lifestyle has changed so much is taking it's toll, I've become a different person, I'm miserable, I cry a lot, I don't even want to go out of the door. I work full time but my boss has been so understanding and has allowed me to work from home, but even doing that has made me feel guilty because I'm not very productive anymore. My husband is very supportive but I feel like I'm letting him down and dragging him down, he doesn't go to the gym as often as he used to, he doesn't like to leave me, especially when I'm constantly crying.
I'm due to see the Rheumatologist again later this month for a review, I'm paying privately and feel he may be dragging it out a little. How long does it take for a diagnosis?? Are there any other tests that I could have, I just want to feel well again.
I'm not sure if I'm asking for advice of just writing everything down, and to be honest I've probably forgotten half of what I wanted to say. Anyway thank you in advance for reading and listening to my moan, I'm so sick of moaning, I just want the old me back.