inkedup

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Everything posted by inkedup

  1. Hi, I'm just wondering if it's not scleroderma related, and due to gynaecological reasons? I often get period style pains (am in menopause) in my back, which are crampy etc. I don't know what age you are, but I don't know if you are at the age where this sort of change is going on? Sometimes cysts can also cause lower back pain. It's also a good idea to get your urine tested, which is easy to do, to check you dont have a urinary tract infection. Lisa
  2. Hi Jess, Yes I'm with you all. I had my big toe joint fused in May on my right foot due to severe osteoarthritis. I also get pain in my right ankle, and my knees are TERRIBLE!! I have also noticed crepitus in my left shoulder and elbow. I too have contractures of 3-4 toes on my left foot (I have just put a picture up; I'd be interested to find out if yours are like mine!!) But they don't seem to hurt particularly. Sometimes my fingers are stiff, but mostly in the mornings.Obviously the best painkillers are those anti inflammatories, but I can't take them with GERD, so use pain medication occasionally if I need to. Best Wishes
  3. Hi, I have a general practitioner appointment in 2 weeks, and a Rheumatology one in 3 weeks, so hopefully will get some answers. My brother has severe ulcerative colitis, so I'm hoping that I'm not getting this. Also my dad and great Auntie have had colo-rectal cancer. Hopefully it will just be polyps or something!
  4. I have limited Scleroderma. This has happened to my toes in a space of a few days!
  5. Thanks Sweet. Sorry to hear that you are also experiencing this. There doesn't seem to be much info available, its all about hands. I will update the blog once I hear more. I keep looking at my toes as if I've dreamt it. Its not painful or swollen particularly, but the problem with feet, is that it's hard to tell as they are used and abused a lot, so I'm not sure what to notice! I think if its on your hands its more obvious. I'm just worried if it gets worse, will it eventually affect my walking.
  6. Hi Marsha. I too have been suffering from gastro issues. I have additional complications (PBC, Hypothyroidism, Sjogrens, and am antibody positive for pernicious anemia). I have a small amount of incontinence, small, but highly upsetting, and I have now noticed that I am passing a small amount of dark blood. It does seem never ending, and its all got to the stage where I am considering reducing my hours at work, as I feel I can't look after myself in the way I need to (am now 45). I try to be upbeat, but I genuinely feel like an old lady, both in mind and body! :emoticon-crying-kleenex:
  7. Thank you both, and your blog was very useful Amanda. I have actually had limited scleroderma since my teens, and I'm 45 now, so was not expecting any surprises now. I have the typical CREST pattern, but no S! I did not even notice my foot particularly, apart from some skin thickening on the bottom, and some dry patches, and feel surprised by it all! I do have multiple autoimmune problems, but just felt my Scleroderma was fairly controlled. I'm now wondering if my menopausal symptoms are causing things to get worse, with my hormones all over the place! I have a rheumatology appt in 4 weeks, so hopefully I may get to see them beforehand; however I should have been seen in July, and Chapel Allerton are really behind - think the NHS is feeling the pinch at the moment!!
  8. Hi. I am suffering terribly today from reflux, the pain has been awful despite 120mgs of esomeprazole and some Ranitidine, triggered from bending over and doing my allotment. Crazy. I really sympathise, it's incredibly uncomfortable, more than that, actually.
  9. Hi guys, not posted for a while. I could do with some support..... A general update since I last posted is this: Scleroderma stable, but other developments. I have had punctual plugs put in my eyes - very dry, plus a big toes fusion due to osteoarthritis. I have been told I am also gastric parietal cell antibody positive (pernicious anemia) so along with this I am also ANA positive, ACA positive, AMA positive, antimicrosomal positive and have low C4 (Confusing, thought C4 was associated with lupus) Due to the gastric parietal antibody, and being a vegan (no B12 in diet) I had further blood tests, my B12 and folate are very elevated, and as I take 80mgs omeprazole for reflux (which helps block absorption of B12) I am very confused :emoticon-dont-know: Furthermore, on return from work tonight, my ankles were massive! I have also noticed that as I have caught the sun(!!!) a little, I have lots of small white dots of hypo pigmentation everywhere. Suggestions/comments appreciated! Lisa
  10. My appt went really well, they have a special Scleroderma clinic, and proper 'scoresheets' in order to assess you. They did all the usual baseline tests. They gave me lots of info I didn't know - they think my hypothyroidism and high ESR is probably due to primary biliary cirrhosis. I am also being tested for Primary Sjogrens as my symptoms are getting worse (my ultrasound shows that my saliva glands are being destroyed)They have also told me that under no account must I experience any GERD symptoms at all, so I must elevate my ezomeprazole from 80mgs to 120mgs daily. I also have tendon friction rubs in my wrist - I thought you only got this in diffuse Scleroderma. They are also going to put me on stronger Vit. D supplements as I have Vitamin D deficiency which isnt improving much. I felt really reassured that I would be 'in hand' and that they will see me again in 3 months (not the year that the consultant in Halifax expected me to wait)
  11. It might be that you have to avoid any foods that makes your reflux worse. I couldn't manage 10 days I'd be in agony! Things that trigger it for me are fruit juices, anything fizzy, alcohol, spicy foods. Also avoid milky drinks, people often drink milk to reduce the acidy feel, but it in fact provokes your stomach to produce more acid.
  12. After previous posts about not being happy with my care in Halifax, I have taken your advice and after quite a bit of robust persuasion (GP reluctant) I now have my appointment for Leeds! Thanks for all your advice to do so. Worryingly however, my general practitioner tells me my chest CT scan has signs of ground glass appearance in my right lung? Not sure if this is anything to worry about?
  13. I had my lung function tests done last May and then again in February. My DLCO was on the low side in both, however my FVC has declined from 125% predicted to 93% predicted. This seems like quite a drop to me. Does anyone know if this is normal or have any experience of this? Thanks!
  14. Hi Moley, I have had a similar experience to you having moved from Bristol to West Yorkshire -in Bristol I had excellent care. Prof. Denton from the Royal Free does a regular clinic in Bristol, so it might be worth asking for a referral to see Prof. Denton there if you can travel from Cornwall. I am in the process of asking for a referral elsewhere; I have progressive limited Scleroderma with 2 other autoimmune problems and am very unhappy about being seen yearly when my health is deteriorating. Good luck!
  15. I have had it a few times, and it is time to have it again. It does help my Raynaud's. I am just put off by staying in hospital, not sleeping, not keeping cannulas in etc. I know I'm moaning a bit, but what are other people's thoughts who have it?
  16. Thanks Jean, I've heard good things about Rheumatology at Leeds. Am very unconfident about my care in Halifax, not helped that my rheumatologist has missed me having quite bad hypothyroidism and that the PBC I have is showing signs of stirring. She just didn't have my previous blood tests and I've had to go quite a long time feeling poorly. I'm glad I didn't have the iloprost there now. Sorry to hear you've had such an awful time, it does put my stuff into perspective - hope you are on the mend (as much as you can be with Scleroderma!) Best Wishes
  17. Following my horrible rheumatology appointment (!) and feeling more awful than ever, I can hardly get out of bed in the morning, I went back to my general practitioner who arranged for me to have some blood tests. It looks as if I'm developing PBC (primary biliary cirrosis) and may need a referral to a hepatologist, but I have also been immediately started on thyroxine as I'm really suffering from hypothyroidism. This explains the terrible exhaustion I',m feeling. This is now 3 autoimmune conditions. Does anyone else have all 3 conditions and have experience of this?
  18. Hurrah! That'll save a few quid!
  19. Hi Louise - Limited Scleroderma and diffuse Scleroderma are 2 different types, they tend to have different antibody types, so your general practitioner would not have saved her from developing diffuse Scleroderma, your daughter already had it. Most general practitioner's would not know what the symptoms of Scleroderma are, it took me 10 years to get a diagnosis. Diffuse Scleroderma is however the worst type. From what I understand if you get a referral to the Royal Free your daughter will be under the best possible care there is, so I think its very positive that you have this referral (I would love to be seen there personally, my rheumatologist isn't brill) Good Luck!
  20. Well done you! Despite a horrible experience it's really positive to hear that you're taking control; hope you get the decision you deserve.
  21. Thanks, I guess sometimes you just need everyone else's point of view. I was going to have it due to some sore calcinosis on my thumb, but am feeling a bit unconfident having moved from Bristol to West Yorkshire. I dont have Scleroderma terribly badly and know that other people have it a lot worse than me, although sometimes I wonder if when you have something for so long, you just don't notice as you're so used to it!
  22. Went to see my consultant today. She wasn't horrible, just not particulary interested. Told me to see general practitioner about my dry eyes. Told me to see general practitioner re getting liver functions tests ( I have anti mitochondrial antibody for primary biliary cirrhosis). Told me to see general practitioner re vitamin D deficiency. Just smiled when I said my thumb was sore as calcinosis is coming through. I then had to direct her as I had lung function tests last week. She said they were normal. She didn't compare them with the last ones done last year, so I had to tell her what they were from a letter. My DLCO is about the same (61% so below average) however the others had dropped by 30%!! She then agreed I needed a CT scan and echo and would see me in a year. I know I'm a bit anxious, but I feel really fed up!
  23. You have every right to work, and I'm just wondering if under the Equalities Act the assessor is able to dismiss you like this? Also the Citizens Advice Bureau is really good, they helped my brother get DLA due to his mental health problems; might be worth booking an appointment and it's free!
  24. Thanks Lizzie; I get seen at Royal Free, Halifax. I know I'm not an 'expert' but my blood tests show high levels of inflammation so you dont have to be Einstein to work out that it must be causing damage! Also have a very high anti mitochondrial antibody level, but everyone seems to ignore this. Dont want to end up with chronic lung and liver problems. I shall take everyone's advice and get motivated!