To do or not to do?

[AMDP]

I'm so fed up of waking up and feeling like my hands and feet are made of concrete and I'm more exhausted than when I went to bed the night before. On days like this it is so difficult to know if I should push myself to do something or I should give in to my illness. It is all so depressing. Ax

[LucyJean]

Hi there, Sorry to hear that you are struggling. You don't say whether you have Scleroderma or not? I am a bit confused about exactly what symptoms you are describing with your comments about hands and feet feeling like concrete. I can understand that the hands when they are affected by tight skin and calcinosis and poor circulation can feel incredibly painful and the function can be very limited. Feet are far more rarely affected so I am wondering what is going on here? If any of your usual symptoms have changed for the worse then the first ports of call are your Consultant/Specialist nurse practitioner and/or GP. If your condition is worsening then your medications and treatment needs reviewing.

The fatigue itself is often linked with increased inflammation for someone with Scleroderma so I would want to get up to date bloods to see what is happening.

In answer to your question about pushing yourself versus giving in the answer is neither!

You should never push yourself to extremes beyond what your body is capable of...but even worse is to go to bed and do nothing. The latter is a recipe for disaster. The less you do the less your body will be able to do. Your muscles will become stiff and weak and waste, your joints will become stiff, your balance and coordination will decrease, your heart and lungs will become less efficient and all of those factors will lead to more exhaustion and you being able to do less and less. A very vicious cycle. The stronger and more effective your muscles are the less pressure there is on your heart and lungs. You especially want strong leg muscles in your thighs. But, if you push your body hard when you are having a 'good' day, beyond its capabilities then you will cause a 'bad' day when you have to rest and recover. Push yourself hard and you might end up with several days recovery, and while you are having to rest and recover the same problem as I described above related to doing nothing will be happening. If you repeat this boom and bust pattern enough you will be able to do less and less and become more and more frustrated.

The answer is to start where you are. Start with what you CAN do. If you can walk 5mins on a good or bad day, start there. Walk regularly for five minutes, once in the morning, once in the afternoon. Do a couple of days like that. If it causes no flare of symptoms build up to 6mins and gradually keep building. Do it consistently and you will find yourself in a very different place. This is working with the condition. Acknowledging where you are, and progressing from there. You will be surprised at what can be achieved by 'exercise snacking'. There is the NHS virtual gym to help you if you don't like going out. I do Qigong which is like Tai Chi. Gentle mindful movement.

If you are struggling with low mood and motivation then talk to your GP about getting some help and support. Or post on here and we will all support and cheer you on, but never give in and take to your bed.

All my best

Lucy xxx

[AMDP in reply to LucyJean]

Wow Lucy, thank you so much for your comprehensive response to my question. I was diagnosed eleven years ago with Undifferentiated Mixed Connective Tissue Disease with some Scleroderma in my hands and Erythromelalgia in my feet. I am going to see a specialist in Bath (we don't have a specialist in Cornwall) in a couple of weeks as my symptoms have got worse and I think my meds probably do need reviewing.

Again thank you for your reply. I think I have probably been doing too much and am having a flair in my condition today which makes me very grumpy. You are right I need to pace myself rather than live the boom and bust life style I usually live. It is just so tricky to do that if you are still wanting to work.

You sound like a very bright and caring lady.

Best wishes,

Axx

[MissusTee in reply to AMDP]

Are you on plaquenil? (Hydroxychloroquine). This can help relieve symptoms although it takes a few months to work.

[AMDP in reply to MissusTee]

Thanks MissusTee, I'm on Golimumab and Leflunomide Ax

[LucyJean in reply to AMDP]

Well, that's excellent news that you have a review coming up! When you have a MCTD with a number of different autoimmune symptoms it can make managing the disease very challenging. Let's hope that they can provide some helpful support and treatment. Bath are supposed to be excellent. I used to know one of the specialist nurses for CTD there called Sue Brown who was lovely and very knowledgeable.

I think any health conditions where limitations are placed on you is hard to deal with. I know I would like to operate on what used to be normal for me, but that is not the reality any longer. It is like someone takes away your Ferrari and gives you an old Nissan Micra instead with a top speed of 45miles per hour!!! No matter how much you slam your foot on the gas you can't get there any faster. Grrrr

Look forward to hearing how you get on.

Lxx

[AMDP in reply to LucyJean]

That is such a wonderful analogy, I’m going to steal it.

Tricky indeed. I’ve got so many questions for the Dr I’m looking forward to some answers Ax

[Bec9680]

Long term antibiotic treatment the way to go with scleroderma & other rheumatic disorders. Go to roadback.org to try & find a doctor near you that will do this treatment. I have been on it for 18 months and doing so much better! I have systemic scleroderma & my symptoms have literally been slowly disappearing.

[AMDP in reply to Bec9680]

Thanks but I’m UK not US I can’t imagine any of our Dr’s would even try it. Ax

[Bec9680 in reply to AMDP]

Yes I understand it’s hard to get them to understand you could try buying the book “scleroderma the proven treatment that can save your life” all the info on antibiotic treatment is in there and maybe they will take a look at it. Depends on what doctor some are very understanding and willing to try others have too much pride.

[AMDP in reply to Bec9680]

Wow, really. What evidence is there that this works please? Ax

[Bec9680 in reply to AMDP]

There’s plenty of evidence in the book and apparently they use to treat rheumatoid arthritis with minocycline until the immune suppressants came along. I prefer the antibiotic because it has immune suppressing qualities & kills pathogens which is just about always the reason our bodies start acting crazy. The book is called scleroderma the proven therapy that can save your life. I was suffering bad I’m now able to function like a normal person other then my hands still alittle tight & swollen but they say it takes a while for your immune system has to get strong to fight off the bacteria on it’s own. The antibiotic just keeps them from replicating. I was sick for 3 years before discovering this so I’m thinking 3 years before remission. I’ve been on AP therapy 18 months now. I’m in nursing school & doing much better.

Also I try to eat fruits, veggies and take probiotics. Hope this helps someone else.