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28, recently diagnosed and a little unsure about what this all means.

Posted , 5 users are following.

Salycats
Salycats

Hello everyone,

I'm new hear and found this place when I was looking for somewhere to get information. I've learned in the past that information from people living with conditions always outweighs 'professional medical' information.

I'll share a bit about me first I guess! I'm 28 and live in the U.K. I've got a wealth of other health issues but was only diagnosed with Sarcoidosis a little over a month ago. For somewhere between 18 -24 months I've been returning to my GP complaining of chest pains, shortness of breath, read and swollen finger joints (referred to a rheumatologists and nada) and extreme tiredness (referred to sleep clinic+ specialist- nada!).

All of this was to no avail, until a doctor I saw for a separate reason finally sent me for a chest X-ray. The X-ray wasn't looked at for some time, however, it quickly led to a referral, further scans and a bronchoscopy. The specialist diagnosed Sarcoidosis a few weeks ago.

I have it in the lymph nodes in my chest which are so enlarged, they appear to be putting pressure on my respiratory system, which is causing the shortness of breath. The X-rays did show signs of cell change in the outer edges of my lungs, but my lung function tests came back with fantastic results, and the specialist is confident I only have stage I Sarcoid.

I have some general questions, however, that I would dearly love some answers to. MY specialist is pretty relaxed about the whole thing (which in many ways is a relief for me) but I want to try and get as much info as possible.

My first concern is with regards to treatment. I have added complications and I am unable, realistically, to take steroids.  I have Protein C Deficiency and have had multiple Deep Vein Thrombosis in both legs since I was 17 (so a little over a decade). I've also had too many cases of phlebitis and cellulitis to count. I've had Leg ulcers on and off since I was 21 and, as it stands, I've been in compression bandaging with my current leg ulcers for the past 2 and half years (still going;(!). I'm highly prone to infections in my legs and, have pretty much been on a constant, changing cocktail of antibiotics for the past 2 years.

I guess my first question is a difficult 'how long is a piece of string' scenario and regards Steroids. For mild Sarcoid (that is showing signs in the lungs), is not taking them likely to be a major issue? My specialist doesn't think much of Steroid use to treat anything other than extreme Sarcoid, and even then he doesn't think they contribute much.

I also can't take anti-inflammatory drugs for my joint pains as I have a higher than normal INR range and am on significant quantity of Warfarin (15 mg daily). I wanted to know if anyone had any ideas for treating/calming/dealing with the joint pain that doesn't involve these meds. I do a lot of writing at work and the pain in my hands is a nightmare

And my final questions is regarding the fatigue. Between insomniac/depression/ anaemia/ underactive thyroid it is admittedly difficult to pin down the cause of my mind-bending exhaustion, however, it has become more pronounced and debilitating since the Sarcoid appeared and worsened.  I work 30 hours a week in a college where I teach classes, support in classes, and work one to one with people. I can’t afford to be this exhausted at work. I deliver a lot of basic skills support so mistakes aren’t really that forgivable. Lately, I’m so exhausted I still don’t know how I’m getting through the days. Does anyone have any advice on this? Has anyone come up with energy boosting ideas? I’m willing to try anything!

Sorry for the huge, rambling message. I’m just so unsure about all of this and I’m finding it difficult to get straight answers anywhere! Thanks- I look forward to hearing from you lovely people J

0 likes, 4 replies

4 Replies

  • Salycats
    Salycats

    Posted

    *new here.. sorry for any mistakes ;( It's been a long week at work. By the time I get home, I'm so exhausted from proofreading and covering basic skills all day, I don't have the energy to take much care with my own writing. My apologies!
    • caz62230
      caz62230 Salycats

      Posted

      Hey

      Sounds like ur having a rough time :-(

      I'm 37 & diag a year ago

      I have same lymph in chest & lungs

      No treatment for me either @ & LF tests not really changed in a year so that's good.

      I think if u don't have to take the steroids then that's good - they will sometimes complicate things.

      I have 2 little boys, work 32 hours a week & run my husbands business- tiredness is an issue!

      Try to be positive as much as u can ... Accept the crap days & hope the next will be better. I get good days / bad days & I find that berocca gives me a great boost they do one with guana with is good for the immune system. This really has helped me.

      Some excercise also good, I find swimming good it's very good for heart & lungs.

      Sometimes I just have to sit down n chill out & call it a day even if it is only 6pm! I find the most frustrating thing that because this thing is on the inside others forget that u have it & how it can make u feel!

      I also have relentless cough! & randomly sore legs!!

      Hope u feel better soon x

  • gustav
    gustav Salycats

    Posted

    I took steroids off and on (more on than off) for 7 years following diagnosis in 2007. They have done much damage. I have osteo-arthritis in both knees, my spine and osteopenia in 1 hip. I'm 53. I have been off steroids for 3 months and so far have had no relapse.I have found the medical profession (with a few exceptions) to be clueless andn have learned more through this site and Sarcoid Network on twitter who are excellent and well informed.

    I wish you well.

  • bert73173
    bert73173 Salycats

    Posted

    It's not easy having Sarcoidosis.  Your complications make it all that more diffcult to come up with a good tratement regimen. Mt wife has had it for 20 plus years and the good news is that it is not a constant problem for her.  Like you, she came home from work at a University and had to take a breather as she walked up the steps.  I didn't know what was going on and she was in her early 40's,  It was not apparent why she was fatigued. 

    She found a Sarcoidosis specialist at Mt.Sinai hosptial in NYC and took a varitety of steroids and breathing medicatiions.  The doctor advised that for most people, they would be able to live without steroids for the majority of the time. The patient controls the medications in that, you only use them if you really have to. 

    Get your rest and and mentioned do what exercise youi can to build up your lung capacity.

    I wish you the best with this disease and hope you can be one of the lucky ones who has it go into remission.  She found a support group of Sarcoidosis patients and has been going to help herself and others.  Your support system of friends and family can be a real asset.

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