Waiting for an appoinment and diagnosis, just need to chat!

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Hi, I've been experiencing many health problems for the last 8-9 years including: joint pain in my fingers, toes, neck, shoulders, knees and eslewhere. I've also had muscular pain and tenderness in my neck, shoulders, lower back and my outer thighs. I have recently developed Reynaud's and have had a recurrence of Carpal Tunnel Syndrome. I get terrible headaches which often wake me up and recur over several days in addition to bog standard Migraine headaches. I've had recurrent Sinusitis for decades. I have had awful problems with my feet, they are so painful I find it unbearable to walk some days, it's not just my toes but also my ankles hurt and I get regular bouts of Plantar Fasciitis. More recently I've had very dry eyes with 'sandpaper eyelids'! I've also had days and days of weird confusional/stupid episodes where I can barely spell or do simple arithmetic. I also have a red raised rash on my inner thigh which varies from day to day! My GP did blood tests which show raised CRP, ESR and ANAs, also deranged LFTs, with this in mind she has referred me to a Rheumatologist. I'm now just waiting and wondered if anyone can cheer me up?

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12 Replies

  • Posted

    Hi Susan, hang in there. There is hope, I have Lupus Anticoagulant and have gone through everything you are describing. With your elevated blood levels sounds like you will need some Steroids!!!! My prayers are with you! 

      Stay strong, keep stress at a minimum because it will throw your body into a attack. Best Wishes

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    • Posted

      Thank you, I really wasn't expecting a response so soon! I have been very stressed but not in respect of my own health issues but those of my brother. In looking for an answer to his health problems (far, far worse than mine) it occurred to me that Lupus was actually a possibility for me.

      I hope that you too get some sort of positive outcome.

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  • Posted

    Susan I was curious If your toes and feet are turning purple, or even white like there is lack of circulation? 
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    • Posted

      Not my toes but my fingers go white or the tips turn bright red whilst the rest of my hand remains white when exposed to the cold, (I recently took some milk out of the fridge and my hand turned white), they tingle when warmed up.
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    • Posted

      This sounds very familiar to me. I suggest to definitely stay warm. Rheumatology is exactly what you need, this does get better once your immune system is suppressed.
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    • Posted

      Thanks, I usually do need to wear gloves and bed socks earlier in the year than most.

      A colleague whose mother has similar problems suggested rigorous use of hand cream/moisturiser, I've found it does seem to help.

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    • Posted

      Susan I wish you the very best. I know this is very hard, just know that Lupus can be controlled. There are many different kinds of Lupus so when you get your diagnosis you will be able to look into what the disease has in store for the future. 

        I started doing a type of chemotherapy that is for Leukemia patients called Rituxin. It is supposed to put my type of Lupus in remission for 4-5 years and it is working. I have been doing this for 5 months and will continue for another 4 maybe more depending on how well it works.

      .

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    • Posted

      I've only touched the surface with regard to treatments and therapies. I think I'll wait until after my appointment before going into the murky depths of all that is available. My addled brain can't cope as it is.

      I wish you well too.

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  • Posted

    Hi Susan,

    So sorry to hear of all your aches and pains. It sounds like you may have multiple autoimmune diseases, one definitely being fibroymyalgia. I have had it for 25 years. There are 18 trigger points in the body and if you have 11 of them active at one time, you are diagnosed with fibro. When you are having a flare up, your brain is receiving so many pain messages it can't handle it and basically tunes out. This is what is referred to as fibro fog. I have experienced this probably 3 or 4 times over the 25 years.Stress is the underlying factor which triggers flareups. I started taking glucosamine 500 mg 3x a day. You need to take it for at least a month before you see any results but I found it did help with my sore ankles and stiffness in the morning. Your bloodwork is showing signs of Lupus also so again stress is not good. If you are working, you may need to take some extended time off work to get you body back to a rested state. Some people even have to go off on disability leave as it is the only way to get their health back. I would ask your eye doctor if there is anything he could prescribe for your dry eyes. He should give you a full eye exam to see if there are any other problems that may be causing the migraines. You might try wearing a wrist brace for the carpal tunnel but again, you need to rest yourself. Easier said than done I know, especially if you are on your own. I took early retirement and not having the stress of going into work every day, definitely helped. Did they also check for Epstein Barr Virus (EBV) in your  bloodwork. That is the virus that causes mono which is an extremely tiring illness when you're having a flareup. Your sinusitis can be fixed with surgery. My sister had it done last year and is much better. I would also go to a foot specialist to  help you with your foot problems. You also could be experiencing Mortons Neuroma which can be extremely painful if left untreated. My other sister has planta fasciits and has to wear orthotics. The rheumatologist will definitely be able to help you now that you have your bloodwork done. You may have to have more specific bloodwork done. Hopefully if you can tackle the little problems and get relief, that will make you feel a bit better and then you can concentrate on the other ones. You may need to start having massages on a regular basis to ease the muscle tension. Hopefully this helps but let me know what the rheumatologist says. Take care.

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    • Posted

      Apologies for delay in reply. Thank you for your advice. I have spoken with physiotherapists about massages, but I need to be officially referred for those! I work on a very busy surgical ward and am constantly on the go on my feet, so as you can imagine my feet suffer immensely. I have some inserts which help.

      I haven't explored EPV but will certainly do so now. My blood results would suggest MCTD and the fact that I have hard, ternder inflamed areas on my shoulders and thighs would suggest Polymyositis rather than Fibromyalgia. I believe Fibromyalgia tends not to disregulate blood chemistry.

      I spoke with my Optician a few years ago about the Eye/Migraine headaches and at the time I didn't have the dry eyes, he said mt eye health was good but sent me to the local Eye clinic where they also said my eyes were fine. I'm due to see the Optician again in a few months so will discuss the dryness then, I'm hoping that I'll see the Rheumatologist befroe then, though!

      I've always said I have no intention of working past 60, so early retirement would be a blessing at the moment.

      Thanks again.

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  • Posted

    I would check the side effectd of the medication your taking to see if any of them are causing  some of your symptoms.  Good Luck
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    • Posted

      I not really taking anything regularly for side effects to be an issue. I take Paracetamol and Ibuprofen and much more recently Amitriptyline. None of these are known to give rise to this set of symptoms, but thank you for the reply and advice.
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