Hello All, my first post and I'm afraid it will be a long one but perhaps someone has had similar experiences and can help.
I am male and 53 years old. I’ve had a diagnosis of Raynaud’s since my teens. Over the last ten years or so I developed visible red veins on the backs of my hands, forearms, feet, legs and stomach, which while being unsightly haven’t caused me much in the way of irritation, so I didn’t go to my GP about them until recently. I’ve also begun to suffer from some oesophageal dysmotility, particularly eating bread or a meal I used to have for lunch consisting of microwave rice and tuna fish. I changed my eating habits to avoid meals I knew caused my problems but again didn’t go to my GP. I also suffer from acid reflux but again, I’ve coped with it by avoiding things which tend to cause it.
I should also add that around 15 years ago I had Sarcoidosis affecting my lymph nodes and particularly my lungs which was treated with anti-inflammatory drugs and after a couple of years seemed to go. However, I have had what I suspect were flare ups fairly regularly as the symptoms of tight chest and fatigue recur.
At the end of last year I eventually decided to go to my GP as I thought I may have a Sarcoidosis flare up and I was experiencing severe fatigue to the extent that I was falling asleep at my desk (working from home) for periods of at least an hour at a time nearly every morning and afternoon. I also asked about the Raynaud’s, oesophageal dysmotility and telangiectasia as a possibility of Scleroderma. I’m afraid I am one of those men who doesn’t go to the GP unless I really need to, so I also asked about hip and back pain that I have been suffering from.
I was sent for a chest x-ray and was told it was clear so it couldn’t be Sarcoidosis. I didn’t argue this, though I know from other sufferers that I have had contact with through the Sarcoidosis UK Facebook group, a clear x-ray does not necessarily mean that there is no flare up.
As the fatigue continued my GP had an HBA1c blood test done and I was diagnosed with Type 2 Diabetes at the end of January. I have, due to that diagnosis, changed my diet and lost around 2.5 stone and I’m sure that this will help put the Diabetes into remission. I am taking Metformin for the Diabetes. I am however, still suffering from fatigue. My eye screening was clear for any retinopathy.
I have had a gastroscopy which showed inflammation of the oesophagus but no abnormalities. They suspected helicobacter pylori but a test for that was negative. My GP prescribed Omeprazole which I took for one month but as it didn’t seem to make any difference to the acid reflux she suggested I continue to manage this by my diet and avoid things which I knew would cause it. They took biopsies during the gastroscopy but I assume nothing in particular was found as I received no further feedback.
Photos of my hands and forearms were sent to the hospital and they confirmed telangiectasia but said it was okay as there wouldn’t be any co-morbidities. I’m not sure if this is correct.
I had an x-ray of my hips which showed some signs of osteoarthritis and I have been referred to the integrated musculo-skeletal clinic and have had a blood test for inflammation markers and an MRI scan of my hips and back. I am currently waiting for results from these, though the possibility here is Ankylosing Spondylitis or something similar. This is partially supported by the fact that I have also been suffering from very dry and gritty eyes. I had an appointment with an optician and she found no obvious causes aside from some minor irritation to one eye caused by my rather long eyelashes being turned partially inwards and touching the eye. I am using eye drops and a heated eye mask which provide some relief.
To anyone who had read this far many thanks. My questions are:
Is it worth me pushing further to determine whether the combination of Raynaud’s, telangiectasia, oesophageal dysmotility/acid reflux and dry eyes is indeed Scleroderma?
Or should I just continue trying to manage the main symptoms via diet and avoidance of foods that give me adverse effects while continuing to discover if other conditions may be causing some of the symptoms?
Mark
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Hi Mark, I would say your combinations of symptoms is strongly suggestive of scleroderma and you should probably ask your GP to refer you to a scleroderma specialist (not just a rheumatologist as many of them know little about this disease). You can find a list of specialists on the SRUK website. They can do a specialist raft of blood tests that will identify if you have any of the scleroderma antibodies. This can be really helpful as they can give an indication of the types of complications you may get and you can then be regularly monitored for them to catch and treat them early. They can also carry out a set of baseline tests for raynauds, lungs, heart, etc and then repeat them regularly to monitor and treat them accordingly. There are quite a lot of treatments these days that can delay or limit the impact of this disease.
Another resource is the scleroderma education project, which run by a chap called Ed in the US who is a fellow sufferer. It is aimed at patients and contains a lot of useful info about the disease and the various antibodies and what they mean for future potential disease progression
Lastly, it is very hard to get an appointment with a specialist, especially because of Covid. I educated my GP about it first and they have advocated for me ever since, so it is worth getting them to understand that this is a whole system disease and so treating each individual symptom separately is not helpful. You really need input from a scleroderma specialist centre/team to get the best outcomes.
Have you recently seen a Rheumatologist? I think it would be worth asking for a referral to a good Rheumatology department that has experience of connective tissue diseases. They will be able to look at your problems & might offer low risk medication without need for diagnosis.
Diagnosis might be a long road. Your symptoms are, I'm afraid, fairly general, as are mine. You see early onset Raynaud's points to primary Raynaud's & vein type telangiectasia is not the same as the mat type which is a feature of scleroderma. A lot of what you are experiencing is fairly common at our age. Rather than pushing for diagnosis, you might be better to steer a Rheumatologist towards symptomatic relief.
My main features are breathing difficulty, muscle weakness affecting my ability to do everyday activities, and acid reflux which after 12 years now affects my ability to sleep lying down.
The breathing difficulties were finally traced to a combination of tietze, pleurisy, and pulmonary vasospasms, but it took 9 years to receive treatment. I started to use a wheelchair last year. Cause not know, but my osteoarthritis or a neurological condition has been ruled out. I follow a very restrictive diet which has controlled the gastric reflux. I also sleep on an inclined mattress. It has taken my husband 6 months to learn not to slide to the bottom of the bed 🤣.
Have you seen an eye clinic as opposed to an optician? I had bone dry eyes since day 1, but only saw an eye clinic this year. I have myobian gland diseases. There's a simple massage technique to unblock the glands. I still need regular eye drops, but the burning pain has subsided.
I have had some truly awful NHS medical care, so I'd encourage you to do some digging & insist on a hospital with a specialist CTD department. But most of all remember you can and should be receiving low risk treatment for your symptoms regardless of diagnosis.
Hi, I was diagnosed with Scleroderma in November of 2019. It was after many visits to the doctor with what they thought was bronchitis. I was finally referred to a Rheumatologist, my coughing was due to acid reflux which was going into my lungs, I too had small red spots on my hands, face and arms. I was sent for lung function tests and also for echocardiogram, 6 minute walk test and ecg because I was breathless and after a couple of years I was sent for a right heart Catheterisation which told me that I had Pulmonary Arterial Hypertension because of the connective tissue disease (Scleroderma). I am taking Sildenafil for this. There are so many things with Scleroderma, I also have aches and pains all the time, I find it difficult to swallow too and when I walk it feels like I'm walking on pebbles. I would definitely push for your doctor to refer you. I'm waiting to see my Rheumatologist again as I have developed more symptoms. Hope that helps.
Hi Mark, you sound like a very knowledgeable and smart person and yes I did guess by reading your detailed post that you sounded like “one of those men who doesn’t visit the GP often unless you ‘really’ need too”, which is a shame, because if you wait until you have more serious symptoms this can affect a good prognosis and therefore more detailed treatments.
I agree with everyone who has suggested to see a Rheumatologist and/or Scleroderma specialist (if you haven’t already), as they will take the necessary tests to diagnose you correctly (as your symptoms seem to be those related to this area of expertises) and hopefully get the best treatment for your condition.
I hope you change your thinking that you should only get help/treatment when you have no other choice or have exhausted all of your home remedies or hoping “things” will soon get better on their own (and don’t get me wrong sometimes it is OK to wait and see first but not to just put it off and wait months before getting advice). Men are not invincible or have super powers 🦸🏻♂️ 😊 and do need to care for their bodies, AND also follow up treatment plans and take medications when needed.
Please take the next step. Take care and I hope things improve soon.
Hi Mark you’ve had some fantastic responses so I won’t repeat any of it BUT I did want to say how fantastic you lost the weight and joints are always happier when we are a bit lighter .
Also , I’m sure you do but keep a diary of all symptoms and take lots of photos of any rashes / lumps / unusual marks . I print my pics out as you can then stick them in front of drs .
If you can’t get an nhs referral your gp can refer you to private rheumatologist . Make sure you pick one with good relevant knowledge (speaking from experience here ).
Hello Mark, sorry to hear you have been suffering for so long. I have been on a similar journey which took about five years for me to be referred for hospital investigations and finally had a diagnosis of Raynaud's and scleroderma and Sjogren's Syndrome (the dry gritty eyes thing). I've also been through many of the symptoms you describe. I had the oesophagus thing just as you describe (I'm given to hyperbole and described mine as a crocodile crawling up my oesophagus). I also had a cat scan which revealed enlarged lymph nodes - then they did a biopsy (I assume to rule out cancer or something). I've also had the red telangiectasia which my GP just ignored - my legs were covered, it's still on my tongue, on my scalp and occasionally on my face otherwise it's calmed down once I was given medication. My GP has several times told me he knows nothing about scleroderma and I don't have the guts to tell him to Google it. I'm further down the line now and still ticking along despite having developed breast cancer. I think you should battle on to get a satisfactory diagnosis as I believe the general consensus is that GP's are not familiar with this rare disease. I appreciate that they can't be an expert at everything but it's not much comfort to the patient. Re the reflux, hospital consultant told me to never eat after 7pm and I've also bought a reflux pillow - which is basically a long wedge shaped block of foam which keeps your upper body on a slope. I find it helps. And yes, it sounds like you may well have scleroderma but, of course, you need an official diagnosis. I'm afraid I'm reluctant to challenge doctors and consultants even though we do have a right to successful treatment. I hope you manage to "get though" to someone who understands your condition because after all this time you need the right treatment. I was given immune suppressants because they said my body was fighting itself. Another point is whether the scleroderma is limited or systemic. When I was first diagnosed I was told I had C.R.E.S.T. later on it was referred to Systemic Sclerosis now the buzz word is Scleroderma. So confusing, but it might help with your research. I have also read that people like you and I (Raynaud's since forever) are prone to developing scleroderma. Hope this helps. Betty
I agree with others that you should seek an appointment with a scleroderma specialist such as the team at the Royal Free Hospital in London. They are used to seeing people with all these different things that are going on (or going wrong!) in our bodies. Good luck!
Very grateful thanks to everyone who read and replied to my post. I have decided that, as suggested, I will ask my GP for a specialist referral and keep trying to get to the bottom of what is causing the conditions that I have.
Just catching up on here so only just read your first post. Definitely another vote for raising the possibility of scleroderma, possibly limited systemic sclerosis. I am 55. Raynauds since mid teens. Raynauds is usually a stand alone condition.
Reflux since late 20’s. Reflux of course a very common stand alone condition.
Like you I rarely went to the GP.
I did have an endoscopy to rule out stomach ulcers and was prescribed PPIs. Over the years I saw the GP and even a GI registrar once as my reflux was getting worse.
Started having some swallowing problems about 15 years ago.
At some point I started developing red blotches on my face, I am not that bothered about my appearance and have always had dreadful complexion, I also work out of doors, so thought little of it.
As my Raynauds was getting progressively worse, I did some research online and read about scleroderma on the SRUK website. Thought, ‘don’t be silly that is a rare disease, I can’t have it.’ 🙄
A few years later I saw my GP about something completely unrelated and when that had been dealt with, almost as an afterthought, pointed out that I had Raynauds and reflux and I had read that they could be linked, what did he think?
Fortunately I had struck gold. My GP knew all about limited systemic sclerosis as his mother in law had died of it 😢.
So he spotted my Telangiectasias and my puffy fingers too and referred me for bloods and then as they came back positive, straight to a rheumatologist. I suspect if I had talked to a Dr about it 5 or even 10 years earlier I would have come back positive on bloods. No one had joined the dots up on my medical history. I have also had dry eyes, although that was post-diagnosis.
So yes please do get a face to face appointment with your GP and ask for rheumatology bloods. Good luck.
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