Home Forums General Discussion New here with Scleroderma and Fibromyalgia

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  • #300036
    Terri9967
    Participant

    Hi all.  I was just recently (last week) told I have Scleroderma and Fibromyalgia complicated with Pulminary Fibrosis as well and I have been on oxygen 3liters 24/7.  I have the severe swelling in hands and feet and now my face the past few days.  I have skin hardening on feet and extremely bad on elbows to the point that the skin has cracked from normal bending of arms.  I am just now getting hardening on my fingers.  The joint paint is aweful.  I am concerned that now that my face is swelling the next thing will be face skin hardening as well seens how that how my feet and hands started out.  The fatigue is extreme!!  I am no longer able to work and fighting for SSD now.  The drepression has now set in as I am newly married with 3 teenage daughters and have always worked atleast one job fulltime.  It drives me crazy being stuck at home all the time and so tired all the time.  I can barely keep the house cleaned up and sometimes it goes days with out being cleaned up.  My new husband entered this marriage knowing that I was ill cause of the oxygen and pulminary fibrosis but with now finding out what I have I am worried about his own health as he is going on 52 and working 10 to 12 hours a day trying to keep the bills caught up and he is getting run down and sick himself.  He is also a recovering alcholic and I would hate to see him relapse because of the stress of my illness.  I am seeing a SD specialist but not till June 6th.  I am currently on medrol and due to start plaquinel after getting the ok from eye doctor.  The have me on vicadian for pain and that doesnt help with the fatigue, I dont take that very often as it wipes me out and doesnt really touch the pain. 

    I was told that the scleroderma is on my optical nerve and that I will eventually lose my eye sight because of this.  I just got new glasses about 8 months ago and they are already not strong enough anymore.  I have not read to many things about SD effecting other peoples eye sight. 

    Wow sorry just realized how long this has become.  I have a tendancy to go on and on.  Was told that its the medrol that I am on that makes me do that.  But again Im sorry for being long winded.

    Any support or advice would be wonderful.  I am hoping that my SD specialist will try me on AP.  But there is not a doctor in the PA area that is listed as a supporter of AP.

    Thank you for listening

    Terri:headbang:

    #310883
    richie
    Participant

    Hi

    Many many folks around here have had similiar cases of scleroderma –obviously –this has been going on for some time based on your progression –apparently doctors up until now havent done very much for you –I would suggest you take the initiative and go to see a doctor who uses an antibiotic approach –I had a severe case of systemic scleroderma and am now in remission —I saw a doctor in Boston –it so happens there is a doctor in Niagra NY which is very close –if you want to email me -rstone@optonline.net —I would certainly not wait until June –you need good medical advice well before that –

    richie stone

    #310884
    linda
    Participant

    Hi Terri,

    I'm very sorry that you're doing so badly at this time. I understand about having to quit work and sit at home. I have psoriatic arthritis and fibromyalgia. The fatique is awful, I've once heard it described as feeling like walking thru glue. It may be a good idea for you and your husband to join a support group; your concerns for your husband's emotional and physical well-being are quite valid. Also, to learn more about AP, you might want to read the “The New Arthritis Breakthrough” by Henry Scammell.

    There is a very good AP doctor not far from you in Boston. I don't know his name, but Cheryl will be able to tell you how to get that information. There are several people here with SD like you, in various stages of treatment. Some are in remission and have been for quite a while, so you'll get lots of support here. There is light at the end of this tunnel, AP seems to work very well on SD. Welcome to the RBF bboard,

    linda

    #310885
    Maz
    Keymaster

    [user=275]Terri9967[/user] wrote:

    I am hoping that my SD specialist will try me on AP.  But there is not a doctor in the PA area that is listed as a supporter of AP.

    Hi Terri,

    Only a suggestion…but is there any chance you could call the scleroderma specialist you are booked to see to ask in advance if they are open to prescribing minocycline for your scleroderma? It may save you precious time in waiting for the appt, only to be disappointed when you go.  Others here have gone the same route, waiting for backed up specialists, only to find that the doctor they were pinning their hopes on refused this treatment.   

    Having heard how well Richie, Kim and others have done on the mino for scleroderma, it would be a shame to put all your hopes into one basket, not knowing if you will receive your preferred treatment.

    I ditto Richie and Linda and encourage you to seek out and travel, if necessary, to see a good AP doctor as soon as possible. I believe there is one right over the border from you in Ohio? You could always keep your scleroderma specialist appt, too, get all the tests you need and see how things pan out with that, later, but at least you'd already be on your road back with the mino by then. 😉

    In the meantime, keep the faith, Terri, and try to do all the research on AP that you can manage, including reading the info and testimonials here on site and the Scammell book, “Scleroderma – The Proven Therapy That Can Save Your Life”. I've read “The New Arthritis Breakthrough” several times and learn something more each time and it always lifts my spirits and brings renewed hope. You have so much going on in your life, but sounds like you have wonderful support from your wonderful, new hubby, who must also feel that getting you well is the number one priority.   

    Peace, Maz

     

     

    #310886
    Terri9967
    Participant

    I would travel as far as it would take!!  My problem would be that I dont know if my insurance, Highmark PPO, would pay if I went to another state for treatment. And seens how I had to stop working and am currently waiting to see if i get approved for SSD finances are tight.(just got home forclosure notice) :crying:  So don't think I could afford to see a doctor unless my insurance will pay for it. 

    I would just love to be able to breathe better, and not be so exhausted and in pain all the time. 

    I want to thank everyone for the great support and advice!!

    Terri

    #310887
    Cheryl F
    Keymaster

    Terry,

    I am sorry to hear what you are going through, and while my daughter was never on oxygen, she was having difficulty breathing, her lung diffusion was 61% just prior to starting AP Therapy.  If you are able to travel, but need to find a doctor that might take your insurance, we can give you a wider list so you can try to find one that takes your insurance. 

    While the AP therapy is not an overnight fix, many patients report that the fatigue is the first to lift.  Of course, everyone is different, but we have seen that posted here many times.  Also, please note that many patients with Rheumatic illness have symptoms of depression, it is a symptom of the disease, not just the situation.

    If you are able to travel, one doctor that you might want to consider, if her takes your insurance is Dr. S in Iowa, also Dr. T in Boston.  Dr. T is with a Harvard teaching hospital, so I would think that there would be a good chance that they take many insurances.

    Good Luck!

    Cheryl Ferguson

Viewing 6 posts - 1 through 6 (of 6 total)

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