Sticky Blood-Hughes Syndrome Support
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Fatigue help!!!

Hi guys

Well since my first appointment with Karen Breen things have not improved she feel there is an underlying problem other than APS she Is querying vasculitis, epilepsy or a demylinating disorder . Yesterday I was told i needed to be certified partially sighted and would never drive again , and I'm now virtually deaf .

APS has taken a lot of my function including my left leg but I'm 31 have a young family and now the fatigue is robbing me of my time with them , I cannot sit down without falling asleep nd the brain fog and memory problems are making life so difficult. Plaqenil is not helping and iron and multivitamins have made no difference I'm still having episodes of TIA and collapse even with an INR of 4 and aspirin .

Has anyone got any ideas on how to bear the fatigue all suggestions welcome



5 Replies

Hi dan Im so sorry you are having such a tough time. It must be very worrying and distressing for you. You say that Karen Breen thinks there are other things going on and suggests what they are. has she done anything about this/ Has she referred you to a Neurologist for instance to check out about Epilepsy for instance? You say you are falling asleep as soon as you sit down, these could be signs of a kind of epilepsy and with medication this could be controlled and things improved - just a suggestion. You need to contact her and explain how you are and ask what can be done or who else you can see to get these issues under control. I know its exhausting doing it when you already are feeling so ill but it will help get there in the end.

Please keep us updated with your progress. xx


I have been referred to Paul Holmes at guys by Karen and I'm having a 24 hr ECG in may , I go to see her again on the 9th April on three weekly visits to guys ,but It all seems to be taking so long I


Unfortunately it does! I have been going through much the same situation myself which I realised only this week is actually coming up to almost a year now and I'm still not to the end of it!! Even privately i had to wait for just over a month for a 24 hour EEG So I do feel for you. Hang in there and I hope you have a supportive family and friends while all this is going on as they need to be there to help you through this if possible. Do check in here though if you need to and we will do what we can to help and support too. Xx


Hi Dan, I can't really help with your situation. Stick with it Karen seems to be very good, I am still having test for various things and mine come to light January last year. I too have been referred to Paul Holmes and again he seems to be very good. I can only wish you well, I truly feel for you, I am 40 with a young son of 3, my miracle baby, however I feel so selfish some days as I really do feel unwell to do anything with him. Your kids will love you regardless of your illness. I do hope they get you sorted soon. Keep us posted. Take care, Sam x


Hi Dann: Firstly, Plaquinel only works on 50% of APS patients as of the studies thusfar. Just a thought, perhaps Placquinel isn't working on you because it is not the culprit disease that is most active at the moment. I do have vasculitis of the central nervus system (brain and stem). It was the cause of a CVA stroke 11 years ago. They told me after the test that takes a camera scope through the carotid artery in the neck and up into the brain (I'm sorry I forgot the name of the test) that although it appears to be quiessent after chemotherapy, there are damaged (demylinated) vessels that an MRI/MRA could not pick up they are so tiny. The symptoms from that are much more painful and destructive to arteries and vessles than those of APS, although I cannot think of a way to tell which disease is causing which symptom on which day except instinct, experience and an educated guess. Add a few more diagnoses like bladder cancer, osteoarthritis, fibromyalgia and the side effects of the meds to fight those diseases and it could very well be a yet undiagnosed disease that has not been discovered but that might make sense with your current symptoms. Epilepsy is another one. One of the reasons I was put on amytriptilyne was to combat seizures in the brain that they thought vasculitus was causing. It could be many, many different things. I think if I were you I would be pleased with this doctor to check into mutliple diagnoses. Even if they find another disease, at least you can fight what you know. If there is a yet undiscovered disease at work here it would be very difficult to treat.

As far as fatigue. Schedule your time. Actually schedule in good time (that time with low or without symptoms) to be a parent. Choose things whenever you can that don't drain you. Don't try to play soccer. Read a scary book in the park at night by flashlight. Board games are great because your body can rest and your mind can use the exercise. I don't know how old your children are, but if getting time with them is your top priority - schedule it that way. Make the schedule up together. If it comes time when the schedule says you had planned a trip to the local restaurant for ice cream and you are just not up to it, make it up in a way the child decides. His/her favorite game, a rain check, bake brownies instead? Watch a movie you're not supposed to.

Children have a very special instict I've found. When I was at my very most painful, my children were the best medicine. They are little psychics and seem to know what you need before you can recognize it. They'll surprise you often.

I'm so sorry you are feeling so badly now, but it won't be forever. It seems like it some days, but I assure you it will change. I wish you patience, courage, patience, and humor.

Many smiles to you and I hope you feel better. Mentally and physically.

Warm wishes,



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