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Feeling a little sad but also hopeful

Posted , 5 users are following.

sha1271
sha1271

so I went to the gyn for a check up today.  We chatted a bit more today and I asked her opinion on a few things.

First she says that for my age (42) that Im the worst she has seen. she says my vulva looks like the women she sees at age 70..  ....here I thought I was one of the more fortunate because I dont have as much fusing as most women on these forums.   She says there are so many cases that are less severe then mine and she sees LS patients at least twice a week.

She did stress how important it was to use the clobetasol twice a day daily when I get white patches,  that really is the only symptom I have other then the tiny tear I get on the perineum.  so back to twice daily until I see her in three weeks.

I asked her if she felt it was important to soak 15 min. first and she said no.  She has not seen any difference.  She said the steroid is strong enough on its own to penetrate the skin that it did not need any help.  Curious if any of you have notice any benifits in soaking first.

Also I have an apt with a Rhuematologist to see if I have RA.  she said I would be in good hands with the Dr Im seeing.  She believes that there is an underlying cause for getting autoimmunity and is hopeful they will figure it out.   The rhuematologist Im seeing does research on auto immunity so im eager to see what he says.  he is a believer in whole body health so im sure he will be making some diet suggestions.  Im really trying to cut out sugar but its been hard lately with birthday parties and such.

any way I thought I would give you a bit of an update where Im at right now.

Shari 

1 like, 13 replies

13 Replies

  • Morrell1951
    Morrell1951 sha1271

    Posted

    Thanks for the details! I suspected the soak wasn't necessary, but I think it's a nice routine and makes me feel I'm contributing to the effectiveness. Placebo, maybe.

    My mother has RA and my sister's just seeing about a very painful wrist that is probably psoriatic arthritis, since she's had a terrible psoriasis-ravaged scalp for two years.

    Very interesting that your rheumatologist is doing this research. Keep us posted!!

    • sha1271
      sha1271 Morrell1951

      Posted

      I do think soaking is good when I have tearing or irritation, it feels good and helps healing. I find it hard to soak at night since we have one bathroom for 5 people. 

      I have had carpal tunnel for years and now having more issues in my hands and my shoulders.

      A friend of mine has it real bad in one shoulder and in his spine. They have him on all those strong meds that have made his immune system so low.

      She assured me that they most likely will start by giving me stong anti inflammatory meds.

      I hope its not what I have but it would explain the pain ive been in. 

  • suedm
    suedm sha1271

    Posted

    What a blow for you - Do try not to be too disappointed, it has taken me many years - well it feels like many, to come to terms with this condition, and in truth i havent but i dont stress about it as much now.

    EVERY time something that upsets me - be it personal financial emotional or my own stupidity a few days later The Itch returns and more fusing.

    I have always bathed not showered i didnt ever feel the old ointments had been removed sufficiently and when in Australia with water restrictions bathing made sense. I didnt spend as long rubbing it in but let it stay on the surface - so that made no difference either.

    I too believe in looking at the whole of one's life style and history, genetically and emotionally,

    As i cook from ingredients and very seldom have pre prepared foods except in a restraurant, try and buy organic when possible dont drink milk - (the hormones they put into cows to continue lactating appals me)believe a moderation in all things and STILL have LS i dont believe that diet alone makes much difference- but of course it depends on where one is starting from.

    My metabolic rate is slow - i need exercise to pump it up a tad- i notice when i am less active the weight piles up So when i did the 5:2 diet recently i did feel a lot better, the LS appeared quiescent too.

    I do hope you find some answers for you- you are so young, please dont let your undercarriage become the centre of your life- my husband had mild MS  from 34  and his thinking revolved around the fact he had it - but it spoilt much of his enjoyment in life and  in truth the physical disturbances he had were minimal-

    Take care

    Sue

    • sha1271
      sha1271 suedm

      Posted

      It was a little shock when I thought things were not so bad. She said the skin looks angry, im assuming she means the white thick areas because I have no raw areas or bruising.  I have accepted this years ago, as much as I hate it sometimes. For years I had mild flares that healed quickly. The last cupple years it has been worse and lots of white skin. So hard not to think about it when im seeing the gyn so frequently now.  She has hopes that it will get better. Hopefully in these next three weeks I will see imprivement with the white areas. It has got a bit better already.

      I am gaving quite the flare up in my muscles and joints right now which gets me down more then my LS.  I struggled to frost my grandaughters cupcakes Monday and Tuesday my hand was swollen and stiff along with my shoulder.  I get so fatigued when my body aches. I do hope I get some answers from the rheumatologist.

    • suedm
      suedm sha1271

      Posted

      Poor ole you...You are in the wars....

      when she described it as looking angry she may have  thought it red and inflammed- possibly around the edges i imagine - it doesnt have to be raw or bruised

      It is good that there is some improvement.

      I do believe that while LS is Not Nice and at times Downright Horrid, there are worse conditions and i think  you are very brave - having constant joint and muscle painis so wearing.

      Have you had any physio for your hands? - i remember seeing people with their hands in wax baths and i wondered what it was like- WONDERFUL, but then the hands had to be removed from this warm liquid.

      when i garden i cant use my hands for a couple of days afterwaards - i try and remember not to overdo  things - but always forget. Mine is just getting older and wearing out - and the "if you don't use it you lose it" mantra is so true. I didnt have much gardening to do for 10 years then started with a vengeance. Take care and with luch the rheumatologist will have something positive to say. I love having my hands massaged, are your joints too painful or would you find this A Good Thing?

      Best wishes

      Sue

      PS listen to your body dont struggle on  rest as you need to - Dont feel guilty about looking after yourself

    • sha1271
      sha1271 suedm

      Posted

      That's why I found it interesting that she said angry, because there is no redness just white skin and normal colored skin. 

      I do try to rest as much as I can but two kids still in school take a lot of  energy. I do have wrist braces to wear at night but nothing during the day. My carpal tunnel is really getting bad. Massage is wonderful when my muscles aren't tender. I do break out in hives though when I'm touched but sometimes it's worth a little itching. I'm going to try melatonin again to see if it will help release stress in my muscles.

    • suedm
      suedm sha1271

      Posted

      Have you thought about taking a photo of the area- Someone here on this site has done so and found it useful when checking up on her progress- or lack of it. May be  you would see what the Gynae sees- or she could show you what she sees if you take the photo with you. Personally i would use a camera - not a phone - too much hacking out there for my liking -  But then i am a cautious soul!

      Tis late  so off to bed

      Sue

  • suzanne00
    suzanne00 sha1271

    Posted

    So sorry that you are having to cope with so much--bad LS, hives, and joint issues, among the trials that you face!  It must feel like too much sometimes.  

    I wondered myself about how often to use the clob with acute symptoms.  Your gyne's comments are interesting.  I agree that it doesn't seem right to back off when the LS is still active (I also still have the white spots), but it also seems concerning just to keep using it once or twice a day ad infinitum if the LS isn't remitting. I'm always wondering what to do, so I just keep using it daily, even though the white spots haven't subsided.  

    Would love to hear what your doctor figures out about your underlying cause for autoimmunity and what the proposed treatment is that's recommended. Thanks for the update.  --Suzanne

    • sha1271
      sha1271 suzanne00

      Posted

      It does seem to be a lot to deal with at times. The constant aching and fatigue it's what gets to me most. I know your too have several issues to deal with.

      My gyn definitely doesn't want me to be using the clob too long but until things improve I need to continue with the daily for two weeks and see from there. It's not something doctors like but there is not much else. I'm not sure what she will suggest if it doesn't improve to her liking.

      I too am interested in finding out what the rheumatologist has to say.

  • sha1271
    sha1271

    Posted

    ok,  time for an update.  I havent been on much because of a lot of pain in my hands.

    I went to the Reumatologist today and he is positive I have Fibromyalgia.  After seeing the list of symptoms I agree, I have all but two.  I have thought so for many years but drs wouldnt really listen.  He said the US just isnt up to date like the UK is or even Canada. He doesnt believe too much in the whole blood testing with the ANA or SED rate,  he says the tests mean nothing really.  Its all about the patient history and talking with the patient along with physical exam.

    I so wish GPs would sit and listen to their patients.  If they did I would have been getting treament years ago.

     

    Anyway, I have a gyn apt tomorrow.  I have not noticed much if any improventment with my LS and now I have bruising in one spot.  I dont know what she will want to do next.  Im getting frustrated.  I have been really trying to cut out sugar and gluten. I dont know what else to do.   Its hard to find time to soak in a sitz bath.  Im so fatigued by the time im done for the day I just want to crash.

    • suzanne00
      suzanne00 sha1271

      Posted

      Hi Shari,

      Glad that you finally got in to see the Rheumatologist.  I am confused though by some of the statements like not believing in the whole blood testing with ANA or SED rate.  Did he rule out rheumatoid arthritis?  I've never heard of a doctor dismissing elevations on ANA and esp. SED rate.Those are red flags, even if nonspecific.  Does he just think you should ignore these? I think that doctors should sit and listen also, but I think that blood work adds important information, too--so I'm a bit confused.  Sorry to add my questions to your concerns.  --Suzanne

    • sha1271
      sha1271 suzanne00

      Posted

      I know Im confused by all of it at this point.  He said My ANA was such a low posisitive that he would call it negative.  And my SED rate could be due to anything and not that high.  He just doesnt believe in testing first before doing a full history and exam.  If a dx is determined with an office visit then testing is not needed.  He has very sick patients that test negative and healthy patients that test positive so the tests really arent consistant.  He usually only does blood test if a dx is not obvious during an exam.  

      He did rule out RA at this point.

    • suzanne00
      suzanne00 sha1271

      Posted

      Hmmmm.  Good in theory to make a clinical diagnosis first, but my experience with a similar-minded doctor was that he missed testing for celiac disease and I suffered several additional years because the diagnosis wasn't intuitive to him. My doctor in the past thought that testing invited random positives (statistically)--perhaps, but it also missed a lot of problems for me! I agree that we can also go too far in the opposite direction and worship the testing.  Perhaps a middle ground does make the most sense. Still wonder what is causing your (slightly) elevated ANA and SED rate--that shouldn't be ignored and isn't normal either.  Maybe he just doens't know, but seems like that doesn't make it unimportant information, either.
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