Hi, apologies in advance for the long post, just wanted to sound off a little as I went to see a difference consultant who was of the opinion that I needed to go into a exercise program but I tried to explain I have a very active job.
After a six month wait I went along to my first session all kitted out for a active session only to be told by this same consultant that there are two groups of people unfortunately I fall into the overuse group and there isn’t anything they can do. I need too slow down and he just couldn’t understand that I need to work to pay the mortgage as I miss PIP by 2 points.
He went on too say that I walk with a roll because it’s a habit but he hasn’t a clue as it’s pain, pain that I have learn to manage most days but some days I just have to write off as I just can’t move.
I have lost weight, invested in silver thread socks and gloves and I use my treadmill when my lower back pain allows, I still work a 40 hour week and drive 40 miles each way to work.
I have lost faith in the medical profession, I have managed to sort out my reflux with a lifestyle change. I am of the opinion that I need to keep moving otherwise everything just will stiffen up.
I feel I am also fighting depression as sometimes the pain is just unbearable.
On closing three consultant all with very different views.
One that wants to give me inflammatory medication but stomach bleeds prevent that.
Another is all about exercise as long as you don’t fall into overuse group, then there’s nothing to be done.
Last consultant is a very nice man that likes to talk about different self help.
My family are of the opinion that I have a very strong will but I feel it’s fading fast on a daily basis.
I don’t mean to sound so negative but I feel so very despondent at the moment.
Written by
Denny57
To view profiles and participate in discussions please or .
So sorry you are struggling. Do any of these consultants actually specialise in scleroderma? What meds are you on, if any? I too, work full time. As you say, it is tough but a necessity. From what you say, it does not sound to me like any of your consultants really understand this disease.
Aspirin, Enalapril, Lansoprazole, Verapamil and was on Celexocib but I was taken off these as I had stomach bleeding.
I was given a steroid injection but consultant is reluctant to repeat this.
It seems you wait so long for a appointment and then so disappointed to be told you fall into a group of overuse hopefully things will improve and the pain will subside.
So sorry you are shrugging and not getting the treatment/help you need.It sounds by what you are saying that the consultants you have seen don't know much about Sclorederma if they know anything....Sclorederma affects people in different ways .What area are you from and what hospital have you been seen at ?..
I hate to say 'I know how you feel' as this is so trite....but...I really do. I have Sys. Sclerosis which has damaged my lungs ...so get breathless a lot so if I do anything too strenuous ..or even not so much...I am exhausted. I also have severe osteoarthritis in my knees,hips and ankles. Swollen finger joints and toes too. Secondary Raynauds is the least of my problems as regards pain. I can only walk with two sticks for a few minutes as the pain is indescribable. Pain meds are a joke as they don't work ...maybe relieve my headache but that is about it. My hubby tuts when I cry out with the pain as I think he believes I exaggerate how much pain I am in...although he has been with me when the consultant surgeon I saw to see if I was eligible for knee replacement and the surgeon very bluntly told us that 'there was a 90% chance of not getting off the table' if he did the surgery. So,...I do get how depressed this illness can make you. I have wished many times that I would pass away during the night...or overdose on my tablets just to be done with it all. I have to do all the housework,laundry gardening as hubby is not able to so have no option but to 'just get on with it' ...only thing I can tell you is.......make the most of the good days and rest up on the bad. It is the only way forward. I do wish you all the best and chin up pet. You are not alone!
Sorry that you are having such a rough time, I sometimes think that family members can’t understand what it’s like when the mind is willing but the body is giving up.
That’s a term I used when I just can’t get up and go to work.
I just think it’s so frustrating as the pain can just stop you in your tracks but you have to keep punching and hope that tomorrow is a better day.
I do hope that you have someone you can talk too when your mood is low.
I worry for the future not being able to work and I have another 5 years before retirement.
All the best to you and hope things improve with the pain.
I understand and relate to your situation. Chronic pain is very discouraging. I have pain every day of my life. Raynaud's causes recurrent ulcers on the same finger and I have lost that fingernail several times. I also have chronic lower back pain and frequent neck pain due to arthritis. I try to be very careful with my health and have been taking Shaklee nutritional supplements for over 40 years. I am 64 now. Calcium, B complex, Vita Lea with iron, Vitamin C, Vitamin D, Vitamin e, Nutriferon, Mental Acuity, menopause balance, and Joint health complex. In addition, I buy Niacin 500 mgs. at the vitamin Shoppe because it helps Raynaud's syndrome by dilating the blood vessels. I take 2 per day, 1 with breakfast and 1 at bedtime. I also use a foam roller, recommended by my back dr. because it helps keep my back flexible. I use it twice a day. You can buy it st Walmart for about $15. I watch my caffeine intake because caffeine constructs the blood vessels. Peppermint tea is very helpful with digestion. I have a gluten allergy and eat Canyon River gluten free bread. It is well worth the price. You are right to keep moving; however, you need to baby yourself by making sure you get enough sleep and relaxation time. Read a good book. I recommend Joyce Meyers books. I am reading, "Change Your Words, Change Your Life". You can read this in bits and pieces. It is so helpful, especially because we all have to deal with dysfunction at times. Reward yourself with little treats, like Virgil's Root Beer! It is all natural, no preservatives, and tastes great! Try a root beer float using Virgil's! Find some special snacks, books, movies, a pet, a hobby, etc. and write back here. I hope you stay in touch and take good care of yourself. God bless you.
Hi, I can feel your frustration, I have also seen 3 different doctors/specialists and its so difficult when there is no one treatment that will solve the problem. These forums are so valuable in getting some of the support you need. Please don't give up and keep researching as much as possible.
Dry mouth and digestion issues are both common scleroderma-related issues. You can have medication, particularly for digestion. Fatigue is also pretty standard. I would continue to exercise but just ease up a bit and listen to what your body is telling you. I used to run but am finding it increasingly difficult but I still manage to walk my dog an hour a day. Take care of yourself.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
How long do you stay off work with Scleroderma/Polymyositis?
Newly diagnosed with systemic scleroderma 
Newly diagnosed.. Are these symptoms normal?
Diagnosis at last for hubby
