Sticky Blood-Hughes Syndrome Support
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Fed up with being in pain

Sorry about moaning no where else to turn.

My family is getting fed up of me with all my ailments.

My wife says, you don't understand me. She doesn't understand me either

For a while I have been in pain, feeling stiff and swollen. About a week ago my fingers in my left hand just ceased up for a few moments. Since then I have been getting worse. Pains down my arms, legs and ankles also my ankles stiffening too.

I have had blood tests for CRP ESR I thing and all came back OK.

My usual Doctor has left the Surgery and I am left with one who doesn't know any thing she always says it is my weight.

I cannot take any more time if work as I gave had 15 days this year due to chest infections and vertigo.

Does any one have any ideas as to why?

Thank you for taking time to read this blog.

9 Replies

Hello There. So Sorry you are having a tough time of it recently. You say that you are under your GP but you dont mention a APS specialist. It sounds to me as if you need to be referred so that they can give you proper care.

Where are you situated? You have probably seen on here we talk about St Thomas's in London - are you close enough to ask for a referral there? If not let us know and we will see if there is anywhere closer we can suggest.

I know its difficult with family when they dont understand. Even those that say they do get bored with it at times but Im sure deep down they really do care very much. Its just very draining for everyone when a loved one has a chronic condition.

Try and keep cheerful as hard as it is and we will do our best to help if we can too.

Big Hug x


Hi, I am from Sheffield and have had good treatment both at the Hallamshire hospital and through my GP. My GP has two practices, the Sloans medical centre on Blackstock Road and the Sloans medical centre on Chesterfield Road. They have been really good with me, and seem to have some good knowledge about APS ( Hughes )!! Hope this is helpful to you.


Stannington Lad... this is poached from reading something on another forum... but I gave this to a few people.. quite a cheery way of getting across to friends and relatives how tired you can feel: My husband read it yesterday and said it was great:

Mary F x



Thank you for your reply.

I live in Sheffield and have been diagnosed about 2 years ago with Lupus Anticoagulant, phospholipid syndrome, migrains, low vitamin B12 and high blood pressure.


I hope you are feeling a little better! and hope you get somewhere with asking for hydro therapy, it might help a bit.. it must make you feel very tired. Sending you hugs. Mary F x


Hi there it would be truly good if you could get a referral to S Thomas, or to a specialist nearer -however St Thomas would be good, perhaps you could show your GP this link (below).: I understand how you feel and it took me a long time to be referred, and I chipped away at it and it was worth it. It must make you feel very tired putting up with this day in and day out. My family is driven nuts by my ailments some of the time, as they do go on and on, with little respite. Things I find helpful for pain, hydrotherapy, and also I do try really hard to keep my weight down, and I persist with daily exercise - but the hydrotherapy does help vastly, for my sore stiff joints at times. I hope you can see a specialist as a fine tuning of your medication to help with the Lupus alongside the APS would be beneficial.

I hope this is of some help, and that you feel better soon. Mary F x


Hello there, so sorry to hear that you have been suffering, being in pain is awful.

As suggested, i think the referral is a great idea to see how things stand for you and hopefully you can get the support that you need.

Best wishes


My very dearest friend, of over 50 years, had an obviously invisible disease.That's an oxymoron! She had obesity. She had it as a baby, as a toddler, as kindergartener and on through the years. She was one of those whose face was so beautiful, she was so full of energy and agility, she got the lead in every school play. Life rolled by and she had two children, had an extremely good provider as a husband, and was being happily provided for when her husband's insurance company refused to insure her due to obesity. They shortly came to find no one would insure her. She had a choice of the "lap band" or more permanent "gastric bypass". She lost over 300 lbs., in slightly over one year, with the bypass. (it was for reasons like this that the people fought insurance companys in dispute that they could not refuse ANY patient for ANY pre-existing condition AND WON!) It worked to her benefit, however, although since she had never had any problems with obesity throughout her life there was no reason to think it would cause an ill event now. No more than growing old.

Your new onset of pain could be obesity. It is the most frequent cause of knee replacement and so much more. It would be good to educate yourself on this subject simply by entering obesity in the search engine of Google. There are much data released to the public for their education and it all has a direct effect on you.

Statins are also guilty of a side effect in some people with regard to muscle aches and pains. There is a gentleman who participates on this site named JimQ, who seems to be informed regarding this subject. You might ask him directly (look him up in the directory) as I have found him generous with his knowledge on this subject on this site. My doctor just took me off my statin. We will perform some muscle/connective tissue tests to try to figure out where the extreme pain in my legs, hands and feet are coming from. Inasmuch as fighting that pain, I agree with Mary and several others on this site. If you can get aquatherapy get it and get as much as you can! It provides the most benefit for your body, mind and soul. It is targeted therapy worked out with a good phsycial therapist or sports (physiatrist) doctor. It yielded remarkable results in my friend's recovery. She is a very healthful person now, with healthful habits and teaching her children how to eat better. This knowlege may not have come to her had she not had that operation. But... that is her story. YOU are responsible for your story.

Your story has to begin with a want for education that applies to you. Ask your GP's office if they have written patient education on your multi diagnoses or if his office can refer you to pathways which may be of benefit to your specific case. At least it will be putting one foot in front of the other. Unfortunately, it is an almost unbearable realization that your disease is not yours alone (it would be so much easier that way). It is your family's disease, your best friend's disease, your innocent children's disease. I found it beneficial to eliminate all those people at first.( As good as their intentions and as much as they love me). Then I began to concentrate on me as a full time job. I used this site as a great source of knowlege and inspiration for pure bravery to endure what must be endured and keep trying to change the things you can to endure the thing in front of you.

I hope this helps you both with your family and your diseases. You started your quest here and I can't think of a better place to begin.

Smiles for your journey,




I'm so sorry you are suffering so with pain. Pain is a terrible thing. And, whatever the reason, it too often is either ignored or under treated. People who don't know pain on a regular basis and/or horrendous pain usually don't know how to relate to it, unless they have a lot of compassion.

I deal with pain on a daily basis but not as terribly as I used to. There was a roughly year period that I had both an unusual type of reactive colitis and also a polyneuropathy in my arms - both of which caused pain to the point I was put on high dose morphine, and even that didn't work. I would cry through the nights and was taken by ambulance more than once to ER in delirium. At the time I had been given very high dose Neurontin (is it called that in Britain?) - an anti-seizure medication - and had gained 100 pounds. However, none of my doctors attributed my pain to being obese; not that obesity might not be a factor. I have many autoimmune conditions and was in a very rough time.

Somehow I got through this, both conditions left. This has happened to me before and doctors explain that autoimmune can react this way with certain conditions. Because of the colitis I lost the weight (not a recommended way!), and the muscles in my arms became usable again. I was very lucky.

But, I will never forget the pain. Thankfully, I was with a good pain clinic who knew what I needed. I stopped the morphine when it was no longer needed.

I am NOT recommending narcotics! What I am saying is that pain is so real and should never be ignored, no matter the cause. Families and friends do need to know it is real, even if they aren't able to feel the compassion. Doctors don't yet seem to address it well, and perhaps that is the problem. I believe that viewpoint is changing, but it is a slow process. Just like knowledge about APS. It is also pretty much invisible. But it is real.

I send you all the best wishes. If your GP won't address it then go to another doctor. Whatever the cause, don't let it be ignored.



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