I have two questions. Does anyone suf... - Scleroderma & Ray...
I have two questions. Does anyone suffering from Scleroderma have mood swings or mild depression, also does exercise ever cause a flare up ?
I do get mood swings/mild depression but in addition to scleroderma I have autoimmune underactive thyroid, which is known to cause low moods and mood swings so I cannot say with certainty that the scleroderma causes them for me.
Oh yes. I think some of it is because I get so tired and just want to be on my own. I also get fed up of feeling rotten, which doesn't help. Yes, I often feel very low for no rational reason. I think it's part and parcel of the condition. As for exercise - don't do any!!
Feeling so tired that I want to be on my own is often my experience - it certainly is this week as the fatigue is bad. I'm physically and mentally active a lot of the time - if I stop though and give in I hit the decks. Fatigue is so frustrating and it hinders my ability to cope with everything which makes me feel low as a result. Trying to fight it and surround myself with positive things.
You sound as if you have very similar symptoms to me. So good to know that I'm just not being difficult !. Many thanks for your comments.
I also experience all of your symptoms, I'm glad someone has finally come out with this , as my consultants don't seem to want to acknowledge this. The fatigue comes from the fact that it is an autoimmune disorder, and although we do have to suffer afterwards it is really important to keep as active as possible. I,m rather concerned that RosemerryVenet does absolutely no exercise as she could be creating a whole new set of problems for herself, i.e. weight issues leading to arthritic problems for starters. I am having to give up my danceteaching of 25 years, but am determined to try to move about as much as possible , even if just slow short walks, better than seizing up in the chair.Try to keep positive, don't give in to it. We must keep fighting!
Yes the answer is to keep fighting and be as positive as we can.Good day today, so thats a bonus!
SandraMarie, I love your philosophy. Excellent advise. I push to excercise all the time. I have found water aerobics to be very helpful. Sometimes I really suffer the next day, and other times I get away with no reaction. But I keep plugging, because I know over all it is good for my body. You will seize up if you don't move.
Yes, I feel low sometimes but I have two ways of dealing with it:
1. I have a lot of interests and as long as I don't get bored while I am busy I forget about my condition and that is good.
2. I try to eliminate anything that might make me feel more tired and low. Recently I have been found to lack vit.D, so the doctor has gien me medication for that and I am taking Vit.B complex. It has cheered me up a good deal and I don't get tired as easily. Don't get me wrong. I do get tired but not as quickly.
What do you mean by exercise flare up?
I too suffer from depression & on medication for it, i have just suffered a flare up and have been bed ridden for 3days, just getting my mobility back, its true the doctors don't believe it when you tell them, i had one really bad flare up late last year, the doctor said don't be silly as i asked to be refered back to the consultant as i had enough of the the flare up Pain not just in the body but the pain from my tummy, my GP told me she was referring me to see the mental health team because it was all in my head, i could not believe it, i went along to see the mental health team & told her the full story, how i suffer from pain everywhere & she said it was not just in my head it was in her head too, i actually laughted with her saying she should see the mental health team acorrding to her she had seen my mental health improve on medication & said it was medical this time & discharged me back to the GP. These symptoms are common with this condition but if you don't accept the pain or fully understand how this attacks the body how can others accept what we go through, I now carry a card which says SO RARE & explains the condition, carrying this card has made a difference when meeting people & explaining what it is I suffer from, I got the card from the R&SA I show it to the GPs & it makes them aware of the problems as one DR told me if she didin't know what it was how could she treat me, make people aware & as for exercise best advice don't vegitate it may be painful but moving does help
maybe you should speak to a specialist nurse about your problems instead of your G,P. They're so helpful. Thanks
I don't even have a consultant who i can turn to let alone a specilist nurse to contact, this would be loverly to have. The consultant at tamesside hospital just laughed when i told him what problems i have encounted and family history of lupus on both sides because i look stunning for my age no one takes me serious. when i mean flare ups i end up bed ridden with unbearable pain that does not take away the fact that i suffer ever day with pain & swelling, this last flare up the OT had fitted impliments for me to survive living but i have still to get support.
Jeanette, I think you should find a specialist who does have knowledge of this disease. I went through being told all kinds of things when I was trying to get a diagnosis. I was so sick, and at the same time my husband was dying with a brain tumor. Went to 15 doctors. They kept telling me it was stress because of my husband. Stress has a way of manifesting itself through physical symptoms. The neurosurgeon who did surgery on my husband, told me he knew a doctor, who if anyone would know what was wrong he would. Well, I saw this doctor and in 15 minutes he told me what was wrong. He followed with tests that validated his diagnosis. He is wonderful. People come from all over to see him. I am so fortunate to have a doctor like this. He is my soulmate (lol) through this terrible journey. So many doctors do not know anything about scleroderma. Keep searching until you get one that is knowledgeable. That doesn't help your morale when a doctor keeps telling you it is in your head. I hear this story over and over though when I attend support groups. We must work to get people aware and educated about scleroderma.
As far as I am aware depression is a recognized symptom of scleroderma and I don't know about a flare up of scleroderma (for me that never goes away) being caused by exercise but I have an overlap into lupus and exercise causes the visual symptoms of that to flare up !
I suffer from quite bad depression, although it runs in my family so dont know if it is Scleroderma linked, although being continously cold, and vitamin D deficiency also doesnt help i,m sure!! I go to the gym twice a week, and try and do a uphill walk most days. I dont always feel like it, but it does help low mood, and keeps me trim! I do find that the gym where i have quite a good workout can bring on bad reflux, and for some reason my raynauds can be quite bad for about 20 mins when i start. Also feel very tired a short while after, but i think its worth it!
I also find that working out sometimes brings on my acid reflux as well as a raynauds attack. I feel better when I work out, even though sometimes I hurt afterwards.
Yes it's worth it. Have been out walking today and feel much better for it.
Thanks
I think it would not be unusual to have mood swings, I get them, especially if I am out and I ache or my feet really hurt to walk on or I get itchy skin or a headache, it's bound to get me down, it's bound to get anyone down. When I start to feel better my mood lifts. I can have quite dark times when I worry about the future and how I will manage, then I think positively and all is fine, it isn't easy though.
You mentioned itchy skin...does anyone have a rash. I have this horrible rash. It first was just on my right leg for years. I could cover it with long pants, because it would get nasty looking. Now it seems to be moving all over my body...really bad on hands and arms now. It blisters, weeps, and then gets crusty. It is an on going cycle..just keeps repeating. It itches to the point it is painful. I have been to several specialists. They all say it is not scleroderma. Have had it biopsied three different times. But I say, Scleroderma is a mystery disease, does all different things in people...derma means skin, why couldn't it be from the scleroderma. I think this is the worst thing for me to cope with. Sometimes my hands look like I have leprosy. I can see the look on people's face if I go to hand them something. Really curious if anyone else experiences this. Thanks.
I had this 3 years before being diagnosed with Scleroderma. I was seeing a very good dermatoligist that sent me to IU Med center ( Indy version of the Mayo) and was told I had Purpura. they also took a biopsy to find out the type. they gave me 2 kinds of salves ( one for day and one for night) and told me it would go away in a few months. it did, but it was a very tearfull summer for me, disney world was our vacation 2 weeks later! but, no one ever said one word to me, but the staring hurt! my rheumatoligist is the best ( IU Med ) and tells me that this is one of many know and unknown conditions of the Scleroderma. I only have 2 -3 places that pop up and they are not that bad, my summer tan hides them. as bad as yours sounds, I would go to The Mayo or Cleveland Clinic. if your DR. will not send you, you can call yourself. they will get to the bottom of it, and you will leave with a diagnosis......good luck!!!!!
Hi Guys, 11 years with systemic scleroderma things have kind of evened out, I am 53,my skin is so much softer than in the beginning. I am even getting facial wrinkles,with most women this is bad but with me I see it as a blessing. As for depression I have taken Zoloft for several years it truly helps and with fatigue, make sure you take an iron tablet everyday everyone with this is almost always anemic. Also prednisone totally keeps me moving,I know their are side effects but I need to live my life in the present. Yesterday it was nice in our area and I went to the park and walked 2 miles.When this began I could not walk from my living room to my bedroom without my heart beating so fast I felt faint. So don't give in to this disease and keep moving!!
I have depression i take medication for it. I find it more when I been down in bed for 3 or 4 days. My stomach has really been giving me trouble and keeping me down. This also brings on anxiety attacks from being cooped up and hurting. When I am able I try and work out or walk but when its this time of year I find it harder because my Raynaud's is so bad I often stay in to keep warm. Sometimes it just seems that it is a no win situation.
Sandra Marie - I do no formal exercise (gym, running), but I am permanently on the go. 3 grandchildren to help with, school runs, cooking for a disabled daughter, helping my 83 yr old dad. So I never get to sit down.
Well there you are, this is all exercise (I couldn't do all that)!
This is my life as well, it keeps your mind off of the illness. I say we all keep moving while we still can!!!!!
I suffer from systemic scleroderma w/ features of lupus. I also suffer from depression for which I take Effexor XR. I think the depression is a byproduct of chronic pain. I have wound up with ruptured biceps from mild exercise. My rheumy said this condition is common w/ scleroderma. Take care.
Also, Sandra-Marie, I have hip problems. 4 operations on the same hip - two full replacements - so have limited mobility. Can't walk far and have been advised not to swim.
What exactly are you looking for ? exercise is just about moving (even moving in an arm chair) it's just about keeping flexible.I imagine you walk further than all of us put together with all those tasks you've listed earlier. You're very lucky!
Just looking for someone to say I am doing ok, I guess. Thanks for the positive comments.
Remember you are amazing - most people could nt cope with what you are coping with - Yes we get low with this - & it is a miserable thing - I try very hard to think of what I can do not what I cant BUT there are days I cry get angry & very frustrated .. but the good days outweigh the bad ... it is tough but remember you are not alone . 
I am a suffer of all your symptoms..I am 32 (diagnosed aged 7) I think fatigue plays a big role in my depression as I am constantly frustrated with myself for not being able to predict and avoid great spells of "down time" exercise,can increase the amount of time I'm greater pain than usual..pace yourself find something u can do (body tonning) and strengthening joints might be of some help.
It so good to know that these symptoms are part of the illness, I was beginning to think that it must be other things that have been causing these problems. After having so many replies from all these great people who are suffering in similar ways it makes me feel more settled about everything. and I'm not struggling alone. What a great site. Thanks acjoseph for your reply, will try your suggestions.
YES!!!! I am very moody and then happy. my poor husband does not know what to do and I feel bad about it. but this all started 4 years ago when I was diagnosed. what can be done to stop or control the mood swings?
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