Behcet's Syndrome Society
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Has anyone had problems with their tendons?

I have had a problem with scar tissue, but also something my doc tells me is tethered tendons. In arms and hands, legs and feet. My hand is bad at the moment, the little and ring finger on my right hand got injured in a few falls last October, a lot of bruising and a large lump appeared on back of the hand before Christmas exactly like a fracture but xray showed no break, but my GP is convinced it is probably wrong or needs doing again and nobody knows what esle that ridge on my metacarpals could be. But i don't have an appt to see the complex hand and fracture clinic at the hospital until Feb 8th to investigate.

What is really odd, is that I noticed I was dropping things and breaking things before Christmas and that although all the bruising from my falls had gone, my ring finger and little finger keep curling over and I cannot straighten them and the hand will not flatten at all now. I have been doing physio exercises as instructed for my usual problems, and trying to straighten them actually gives me a sharp pain and pulling sensation nearer my elbow and knotty lumps appearing on my arm underside nearer the elbow....miles away from the injured hand. The doc says the tendons are tightening and have become all seems quite odd.

Then last night, my toes kept curling up in bed and I could feel a similar tightening on underside and arch of foot, and going up side of calf....horrible feeling. It feels like i am seizing up, and if I do not keep them flexible and straightened that they could end up getting stuck. At the same time, I have also been having problems with lack of sensatin and weakening down one side from head to toe with a gap somewhere above waist.

I have a friend with exactly the same problem in his hand/arm except he has Dupuytrens Contracture causing it. He has MS but nobody knows why his fingers are contracting. he has to have steroid injections, I know a BD sufferer would probably never get such treatment as it could make it more scarred and worse under even light trauma.

Has anyone else had a similar type of contracting, or tethering of tendons, which was part of their BD or seemed to be happening for no known reason?

I already had blocked and squished median nerves, and other contractures due to excessive scarring after debridement operations (following thrombophlebitis set off by IV and injections etc from pancreatitis treatment) and that has left my hands quite disabled and arms and wrists locked, so I cannot extend arms or use certain fingers or place palms upwardws.....I cannot afford to have the only fingers I have left working on my Right Hand contracting too.

My frustration is that in the past, I had long waits between appointments to sort out any hand problems, and each thing I am now stuck with was as a result of it becoming too late to do anything about. I am told if I had physio before scar tissue cemented, I would not have such bad scarring with my wrists locked and arms unable to extend. I cannot use hands properly, cannot wash and bathe myself or use the toilet due to arms being too short now. At the time it was all tightening and scarring, I was told that I could not have any physio or corrective treatment until after the inflammation, cellulitis and thrombophlebits with massive ulcers had healed.....but then when they had healed, I was told ''ahh its to late to do anything now, as its all scarred and cemented'' as well as 'sorry, but to operate on those to free them up would cause more scarring and Behcet's involvement so too risky''

However, the scarring was stuck at a particular level and slowly tightening, but now there seems to be some sort of odd tendon thing happening and I can feel them tightening all over my body....even in the neck....that is really odd and my docs keep saying ''we don't know what that is''.

Does anyone get the feeling that because of BD, or existing damage docs are more willing to accept you have odd complaints and have less urgency about them so that you end up stuck with them? I am certain that if I had been a ''normal'' patient, I would have had more investigations and corrections of some of the odd things that happen to me. For example, I am sure most people who have an injury about the end of October, do not have to wait and find out if it is broken or not or start attending a clinic mid February.

Sorry, am starting to rant here.....really I just wondered if anyone had got inflamed, damaged or tethered tendons that tightened up, and if early treatment helped...or they got stuck with it. Would also be very interested to see if anybody got Dupuytrens Contracture, for not apparent reason. It does seem to happen to people with immune problems (that I know of) despite being attributed to no reason.

28 Replies

Hi, sorry for your ailments seems you are not having such a good time of it lately. As to your question yes, I get the same sensations especially at rest in the legs/feet and after use with my hands/arms. I also had a bad accident about 7 yrs ago culminating in 3 breaks and a full dislocation of the left ankle. I just assumed the leg problem was because of this as I had 3 ops and now have pins and plates holding it together. But as time has gone on it is now both legs and arms!!!!!! I have suffered with BD for over 26 yrs and never thought it could be part of it. But after many, mant visits to my doctor and physio, acupuncture, pain clinics and A & E another doc has arranged for me to see a long it will be before I get a definite date....who knows......I am in England and the NHS isn't what it used to be. I know this doeSn't answer your questions but perhaps together we can discover some answers. Good luck with your Feb 8 th apptment and let me know how you get on.

Chin up.


Billi xx


Me again, just looked at the dupuytrens tag and thought what I am about to tell you what happened to me. About a year ago I woke up one morning and my right hand was closed like a fist and I couldn't open it. It was very painful and my husband tried to open it gently and tried some massage but to no avail. Eventually it partially opened by the end of the day. By the time I got to the doc it was open and painless, she sent me for blood sample saying it was a classic sign of rheumatoid arthritis. The results came back negative and it didn't t happen again for a long time. I didn't know about Dupuytrens until your question...could it be...from reading it certainly seems so, I will definitely bring it up with the Neurologist.

That's all for now.

Billi xx


have a look on YouTube at only applies to very specific fingers....the fingers that I damaged in a fall. What happens is that your ring finger, on either hand, closes right down and you cannot open it up....a physical impossibility even with is like it is straining and breaking and it can make it worse to exercise. So forefinger, thumb and middle finger are all normal, then ring finger closes right in to the palm, and little finger gets pulled part of the way....its odd...I did see on it on embarassing bodies ages ago, then I have had this after the possible break/injury to my hand and my MS friend showed me his (fingers |I mean!) and we wondered if it could be an immune problem.

My ring finger is not too bad when wrist is in a certain position, but the pulling sensation is up near the elbow (GP says it is a tethered tendon...and my arms are very is all very odd, and extremely boring....I have had medical oddities popping up most of my life and constantly since 1998)


Hi Essie

I'm having terrible trouble with my Achilles tendon. The neurogist said it was 'typical of BD'. I was doing some research the other night and came across this article. It is very indepth (written for doctors) - the interesting thing is they are starting to realise that it is another symptom. The doctors here in Australia keep saying there is not much literature available.

This article probably isn't going to help much - I was going to post it up anyway - but it shows that research is being done (our problem is we are about 5 - 10 years too early for a lot of the answers)

Thinking of you



That article was interesting. Thank you.

My problems are complex. I had ulcers in my forearms, due to IV needles, that became around 10 inches along as they tracked along the vein. Areas of my skin went black and died off, and the ulcers collapsed into very large holes.....going right down to the bone with huge chunks of arm missing, and a lot of rotting and complication. it looked like a shark had bitten a huge chunk of meat out of my arm.

When my arms healed, the scar tissue cemented and it means my wrists are locked, I cannot supinate (put hands upwards) and cannot extend my arms which are bent just over right angles. The holes closed up from side to side, did not develop new tissue as such and were not splinted so it meant the arm shortened.

The fingers are stuck up in the air, as tendons are stuck or too short. when my wounds were being cleaned by a district nurse, she cut the tendons thinking they were bits of stringy dressing inside the wound. Unfortunately, I now know that she was trimming my tendons and it means some are too short leaving fingers sticking up in the air

I had operations to debride these wounds but the surgeons did not really treat me as a Behcet's patient and did a normal debridement and it went badly with more cannulas causing more problemsso I also have some scarring and nerve damage in my feet, shins and thighs.

I was sent home the day of the surgery, and nobody checked up on me as I slipped through the net due to the district thinking I was in hospital. I was too sick to even know I had discharge papers, and have no family in this country to check up on me.

I had a massive reaction and became unconscious with a really bad fever and got sent to a different hospital for emergency treatment.

It took around 5 or 6 years for the surgery wounds to heal which were far worse after the operation than before. I was just passed around and examined but did not get any treatment or help...nobody wanted to take the risk and I was told I could not have any physio, OT or other treatment until the inflammation was no longer active and all ulcers had healed. But when they did heal, after years, it was too late and got me stuck with quite a disability.

On my Right arm, the scar tissue has compressed the median nerve so I have symptoms of carpel tunnel and phantom limb pain (my brain thinks the scar pressing the nerve is actually me having lost the arm) and I have odd sensations as well as pain, with pain even if air blows on it or anyone brushes past me.

Anyway, this latest bit of problem was triggered by two falls. One where I punched the tiles in the bathroom to stop my fall, and the whole of my right hand went black...and another where I hit the ends of my fingers to break a fall. At the time, there was bad bruising and i just waited for it to heal.

The only two fingers left that have fairly normal sensation on my right hand, were the very two fingers injured., the bruising went but the pain got worse and I was dropping things.

Then a ridge appeared, which when examined had all docs saying it was a classic metacarpal break from a punch injury so I got an xray. The radiologist said there was not and has never been a break which shocked my two GPs as they don't think this odd ridge is anything but bone. It is not on a joint and looks exactly like a break, offset,with a poor heal. Then the curling of the fingers started, and the two injured fingers will not straighten and I have to keep trying to gently exercise and spread them out. If I put my hand flat on the table, the strain is too great and the ring finger just goes white and starts to bend sideways and curl up.....if I try to straighten it myself, or someone else does, there is almost a feeling as if it will break or just snap....and it goes white with pressure.

My friend who has MS has the same problem after a stroke, and was told he had Dupuytrens contracture. He seems to think it is connected to his MS and stroke.

I am a bit peed off, because I thought my hand/arm disability was going to be at a certain level, which is bad enough, but I am worried my activities will be even more limited and I will have to adjust to not being able to do knitting and crochet, writing and drawing and computing. I can type really well with just two fingers, but hoping it won't go. I can't seem to hold my Kindle, and miss reading in bed or holding a book. Tried a stand and I just keep knocking it to the floor trying to do page turns.

I wondered if any BD patients had their tendons shortening, or getting contracted without it being muscle or joint....I seem to be getting a bit of it everywhere and it does not seem to be connected to joints, otherwise the stiffness could be arthritic. This seems like something is giving me tendinitis. I even got it in my jaw last night, and had a hard time opening my mouth!

I have been warned to be careful, because exercising can actually make tendons worse if there is contracture, it is different from muscle or joint problems apparently, My friend with Dupuytrens was told not to try to straighten his finger as he will damage it and make it worse.

My guess is this. The scar tissue in my arms is slowly hardening off, and causing the stiffness and pain and complications and the neuritis etc....but on top of this, I feel as if the couple of falls I had set off some sort of inflammatory response, which has travelled up the nerve/tendon or bone a long way from the place that was actually traumatised. An average person perhaps, would just get local bruising or breaks and inflammation...but in me, this seems to have set something off along its path....

I also got very physically ill on top. A nurse friend of mine suggested that the contraction I am suffering from, could be linked to my internal problems. I have chronic pancreatitis/inflammatory bowel, pituitary failure and Diabetes Insipidis. She said it is possible for patients with potassium and sodium imbalances to cause the contractions and perhaps the DI is playing up. But I cannot risk blood tests to find this stuff out, as those cause the veins to die off and punch through the skin and ulcers with sinus tracts that are about 10 inches long...and I will add more problems to the list.

Sorry this is a long one. I am not expecting answers to my specific problem, but am hoping to hear if tendon contractions or that sort of thing have happened to any other sufferers, because I was really curious after my friend with MS has had Dupuytrens conracture and he really felt this is linked to his over active immune system.


Me again (must be part of BD). If you look up my questions Andrea and Felicity had a few suggestions - mainly massage and stretching.



Just one to add to this about electrolytes. Whilst I was admitted into hospital in november I was found to have an acute potassium and magnesium deficiancy and had replacement Magnesium and Potassium IV replacement theraphy followed up by supplement when I came home.

I noticed that a lot of the contracture I had, had for years reduced at this time and it was much more comfortable and less aggressive.

I have the smallest needle possible for the blood tests so don't know if this will help you, but could be worth looking into.

I don't want to frighten you but you would be suprised what symptoms you can get from electrolyte imbalances, especially pottasium which can be pretty dangerous.

Have alook at this link

So your nurse friend maybe onto something

Not sure how you can get this checked out without having a blood test, but it maybe worth the risk to find out as electrolyte problems, can be horribly out of control and make you feel very rough.

Hope this helps


It is possible that I could have eletrolyte inbalances because I have cranial diabetes inspidus. This means that my kidneys do not retain water as they should due to lack of hormones and watery wee is very frequent and I can dehyrdrated. I take Desmopressin to counteract that, but that is an inexact science and does not always stop symptoms.....

My tendons though, are very tight, but I have very bad scar tissue and my flesh is rock hard...the tendons are stuck, shortened, or just do not move through the tissue easily.


Forgot to say, I do have a potassium rich diet, but the Diabetes Insipidus can easily counteract that. However, taking Desmopressin can swing the body the other way and I can end up with water retention. The cramping from either of those is normally muscular and is different. Now, I have relaxed muscles but it is the tendons themselves which do not seem to be working or have contracted and I bet it is stuck within scar can feel knotty lumps just outside the scar area, where a tendon is.


Hi erssie

I can see you have a difficult problem on your hands.

My problem is a combination of different things as well. One problem making the other twice as bad with the tendon problem being an individual problem to the electroylete problem, but added together makes it worse.

I do not have the same addtional problems as you with the diabetes but my kidneys are beginning to have problems with retaining and then the opposite where there is an imbalance of minerals rather than a deficiency all the time. The water retention reacts the same when I am dehydrated to when I have retained water by blowing up and swelling.

Virtually all my large tendons are ridged and hyper-react with lumps all over my body under the skin along the tendons. I have lumps on the tendons all the way down one side of my spine which hyper-react and pull me off balance. At times I have had my head and neck in spasm, literally bending and sitting on my shoulder, unable to move it. Also have my jaw completely spasming open or shut and fatal if I yawn...which I do a lot. The toes and feet are another area as you have also described above.

My neurologist says it is in response to inflammation in the nervous system, which has gone all the way down my spinal cord. All my nerves hyper-react to all sorts of stimuli. It could be dehydration, an infection, a fall or shock, cold, heat, lack of sleep, the way the wind name it.

When it first started [about 6-7years ago] I also had what seemed like an over production of scar tissue [or calcium] which virtually glued the connective tissue and tendons in their place....over time that has gradually reduced from what it was. The xrays showed calcium build up all over the place, which confused the doctors no end and one of them asked if I had dropped off of a tall building.

I was unable to take Muscle relaxants as I have muscular weakness, including my breathing and these make this worse....I was therefore virtually left to get on with it and find my own way out of the problem.

I did push my doctors to get the steroid injections when things got too bad and trigger point management and nearly every doctor I saw freeked out and refused to touch me. But then found an excellent Pain Clinic/Anaesatist Consultant who was willing to try and help, which it did help a bit and enabled me to stretch better without the over-reaction coming on so much.....we was thinking of trying botox but I chickened out of this in fear of it making it worse.

If I lay in bed for too long I literally start curling up and the pain is too much so I have to keep getting in and out and stretching, when I really am wanting and needing to lie in bed and rest.

Don't know if this is the same as yours but have personally found keeping the hydration level along with gentle stretching every day when at all possible has eventually beat some of it into submission.....keeping moving is definately the key in my case.

lesley's massage with the rolling pin on the calves sounds good and I have used a foam roller to stretch my back, hips, legs and arm muscles, which keep the tendons in their right can feel incredibly painful but painfully nice at the same time. I use some Glucosamine gel with chili pepper and menthol in it which works well if massaged before stretching, especially if you put it in the fridge first.

I really hope you get to the bottom of it as it really is a difficult problem to deal with....especially with the extra problems that you have with injections and the kidneys.

Let us know how you get on



I have found that most of my problems are sort of neurological....including the tendons, muscles etc. I have some paralysis of the gut and the it is thought that the blood supply that supplies nerves is affected and I have trouble with sphincter pressure because of it as well as nerves to organs...

Anyway, for nerve pain, very little helps except my nerve drug pregabelin (also knwon as Lyrica) that really helps relax the bits that are hurting but does have side effects like lack of co-ordination, some falling, some dizziness and tiredness and a difficulty in speech.....but if you have not tried it, you might find a low dose of that could help if you ask the doc. It is supposed to be related to gabapentin, which is cheaper, and they keep trying to switch me to that but it has a completely different effect and I did not get on with gabapentin. However, the pregabelin greatly reduced the other painkillers I need.

Also I do have cannabis choccie to eat sometimes.

I was interested to hear from one doc, who told me that she thought my skin was 'sticky'. If she picked up a bit of me, it sort of felt stickiy and stayed in that shape before pingin back again. She noticed it after she had difficulty in getting a needle in a vein, but also when she withdrew the needle, my skin and tissue was sticking to it.

I really feel as if the tendons in my arm have got stuck down to something as well as in my feet.

I admit that I do not have anywhere near enough exercise. Walking and swimming are painful to me so restricted. I do have dogs, but only go out with them occasionally. I should force myself to go out more....but just get tired of being uncomfortable so take the easy option!


Dupuytrens can affect both hands and feet but with the hands it is the little, ring and middle fingers that bend in, they cannot be straightened under any circumstances without surgery, they cause lumps in the palm and catch on all sorts of things. Fortunalty a great deal of research has been done on this disease as my husband had 3 fingers amputated a number of years ago due to it, that would not happen now.


My middle finger is fine....but my ring finger and little finger are curled over.

I don't have a lump on my palm, just a bony ridge on back of hand.

Trying to straighten them is impossible, it just feels like a terrible strain...but there is a lump and pulling near the elbow. Perhaps I don't have what your husband had, I am most likely suffering form the fall I had as well as getting tendons stuck in other car tissue unrelated.

My friends Dupuytrens he got after a stroke and MS. He can straighten his fingers now after having cortisone injections in his palm.

He also had other tendon problems a few years ago and had a cortisone injection in his shoulder and neck, and the amount of it was quite high. He got cortisone rage and in an argument with his wife, where she admitted cheating on him, he threw a shelf ornament across the room in rage....unluckily it did land on her and knock her unconscious and crack her head open.

It was completely out of character for him....he phoned an ambulance and the police as soon as he realised what he had done and got arrested for GBH andf attempted murder and jailed for a few months, until they worked out the cortisone has made him act in a way that was totally out of character and his wife explained the situation.


Hi Erssie - just re read your original post. Scary how easy it is to slip though the system.

I have something similar with my right forearm - the ulcers go right down to muscle. I was thinking of asking the doctors to operate and clean everything out but on second thoughts I can still pretty much do everything so might leave 'well enough alone'.

I have just been diagnosed with diabetes so will have to be very careful of potassium and magnesium (thanks Andrea).

Erssie - I was worried about dropping the iPad or Kindle - can you go back to large print books or audio books?



Particularly important as where you live is very would be prone to electrolyte problems anyway. I drink loads of water but too much water can also create an imbalance :(


I love my Kindle so much......I try to lie on a bed or couch so that if I drop it, it is falling onto the bed and not getting damaged....I have dropped it on the floor and am lucky it is not damaged.

My larger ulcers, were around 4-5 inches in diameter, and in depth went down the bone. At the bottom, you could see the bone with a bluish sheath on it, and then above that a layer of stringy white looking tendons....often the ulcerls ahd started in the veins so they had died off and punched up through. The ulcer was more of a giant a shark had taken a bite out of the forearm. Often the hole was where more than one ulcer had joined together and caved in. The healing meant the far edges had to pull in to meet, and it shortened my arms and the scarring has caused them to be bent at right angles and other problems in mobility.

A small ulcer tarts with a small blue circle, that turns to black and then caves in. Then one surgeon, got a long metal rod and shoved it into the small venous ulcer to see how long it was, he could push that rod in for about 10 inches or so as it rots back to form a sinus tract. It was these small ulcers that needed opening up and de-bridement, but the hospital failed to do what was planned. It was supposed to be laid open and left to heal bottom up, but they stitched it and I got Behcets type reactions and to be honest, had far worse problems.

Personally for me, if I get an ulcer and the limb is functioning as normal, then I would try and heal it myself. I would never go for surgery now, because I realise that if the surgery should go wrong with me in healing, there is a risk I might lose function of that limb. I got not far off needing amputations and kept being frightened by docs saying if I could not tolerate the antibiotic treatment, then I might end up with bilateral amputation. This sort of puts my smaller venous ulcers I had to begin with into was a mistake to have surgery on them, but only for me.

I realise that my Behcets (or whatever it I don't always believe that is correct) is quite extreme and my body is really over the top in reactions. Chances are someone else would not get such extreme problems and is on better medication. So me saying I regret my surgery, is not going to apply to anybody else's circumstances.

In my case, when I went to have surgery the ward kept me NIL by mouth and even though I was on a dose of steroids, they stopped it altogether. They stopped all my meds, and kept saying I should not require meds because I had not had the surgery yet.....they completely ignored my condition, and just kept it as a 'normal debridement'. Their promise to keep me in 6-8 weeks and supervise healing was not kept and I was discharged the same day as surgery. Then the district nurses did not visit thinking that I had been kept in, and I had been told not to touch the dressings til they arrived....I got really sick and ended up in another hospital as my GP had lost faith with the one I had surgery in.

I think if anyone went to have a debridement, they should ensure that their treatment that is controlling any inflammatory condition is kept up...that is really important.

I regret not just taking my meds anyway, and just not telling the ward, but I was concerned about them knowing my full history and what I had been taking etc. Also sensible surgeons will keep you on a prednisone drip throughout the surgery and give you prophylactic antibiotics to back up the steroids too as well as all your normal meds and they would most certainly monitor your healing. These are all things I did not get back in 2002.

My scar tissue covers whole of hand, forearm, underarm, and goes right up the shoulder where cellulitis spread. I also have scarring over buttocks, thighs, shins and tops of feet. Fortunately my face was not affected, but I do have a big pumpkin head from previous steroids giving me moon face and a buffalo hump.


Hi there

Yes I have terrible problems with the tendons in my feet, to a lesser degree my fingers but also the tendons all over my body. 4 years ago I had to have major surgery on my left foot and more minor surgery to my right foot. They had to resight all the tendons in myleft foot and break and pin the toes. They also removed a neuroma. They also removed a bunion that grew in under a year.

I am now having further surgery on Thursday as my body has turned against everything the surgeon had done. He is trying to plate every thing this time but will disconnect the tendons as they are worse than before. The neuroma has grown again so that will also be removed. I will then have to go through it all again with my right foot and have a bunyion removed that has suddenly grown.

This all started with terrible excruitiating cramps which the drs just ignored. At least now St Thomas's take it seriously. I am having the op locally and have to stay awake like last time, I'm not lookingforward to it but it's also a relief to be having it done. I now use Dermatix (definately worth trying) for the scarring as my scars can be awful and I had to have one re-operated on after steroid injections into it didn't work. The op didn't work either and it was only when I was lying in hospital for 5 weeks after having double pneumonia, pericarditis and acute respiritory distress, that the scar more or less disappeared.

I don't know what the answer is but if you find one please tell me.

Wishing you all the best


That sounds awful.

After waiting since Nov last year for my appt it was cooming up this Friday 8th Feb, I found a message on my answer phone this morning telling me that after considering my appt, the consultant has decided it is best that it is cancelled so it has been cancelled without seeing me and they advise I go back to my GP's surgery to start the referral process again with another hospital.

This is dreadful, I am in so much pain and struggling to keep my hand open and fingers uncurled with a massive lump on the back of my hand. I had this injury end of last Oct/ beg of Nov and been waiting months to see the complex hand surgeon, and now he has looked at my notes he had decided he does not want to see me at his hospital....he has not even referred me on, just sent a message to tell me to go back to my family doc and start again! This is without even seeing me.

There is no doubt that I had been a ''normal'' person I would have been seen in a clinic right away, or referred from A and E instead of told to go back to my GP and this problem would have been diagnosed or fixed. As usual I am going to have to wait while I get referred around in circles and then be told ''oh dear, its too late now, there is nothing we can do about it you will have to live with it'' which is exactly what has happened to me before.

My scarring on the surface of my skin is not so much as a problem as the deep scarring that goes right down to the bone and traps the main median nerves and tendons there, I don't think there is anything topical you can apply to reach that deep is there? I also have scarring inside my digestive system and around certain organs and it causes adhesions.

This morning, my finger went bright red and started to swell up.....exactly like an infection, except it is probably just inflamed. It looks and feels like cellulitis but just happens to be on the 'injured' hand....this is a mess. It is my right hand and I need it. Without that my left hand is alaready useless due to shorteneed tendons and scarring. I had a wound there which went from wrist to half way up forearm about4 or 5 inches above, and was side to side the same, and went down to the a huge chunk of flesh missing. It was not allowed to heal bottom up properly, and so the sides pulled in to meet thus shortening the whole arm and pulling my fingers up in the air after District nurses kept trimming my tendons thinking it was bits of dressing, so I need my right hand arm which is already partially paralysed, but if this is left like it is, I would honestly be better off with robotic hands!


Dear Erssie

Your problems sound absolutely heartbreaking and I am so sad for you.

I know what it's like to go from one dr and hospital to countless others and not get any help. Its beyond frustrating and you feel that you are dying slowly and they don't care, they just want to pass the buck all the time. I don't know where you live but unless you're already at a b d centre like Barts where they should help you, try St Thomas's in London. Go to your'e GP and insist on attending the Lupus Centre and sit there until he agrees to a referral. I did that and although I do not have Lupus the drs are wonderful there, they treat the whole body and refer you to different hospitals and collate everything. My GP is kept informed but doesn't have to refer me anywhere. St. T is used to hearing unbelievably bad experiences at other hospitals. I also attend the rare diseases dept. at the Royal Free at the moment, and they may be able help you. People go there from all over the world. This was organised by St. Thomas's.

I suppose they have ruled out some form of Lupus for you, but oddly enough while I was at St.Thomas's last year, there were 2 ladies who presented symptons like yours and one of them was in absolute agony. One had great big holes in her hands and other parts of her body that had not healed and she couldn't flex her arms or hands and could hardly walk. They both looked like they had been shot and where old holes had healed up they were terribly scarred.

The worse affected lady had only been ill for a few months and became ill after visiting relatives in Africa where it was very hot. The heat can be a trigger. The other had been ill for several years and was on some form of treatment and was infinately better than the first lady. Please don't give up getting help it took me nearly 30 years to get the help I needed ,but there is so much more available now but its just getting to the right place and that is the difficult part.

I have nearly died several times but no one would take responsibility to help me until about 5 years ago when I became very vocal and insisted on getting referred to different hospitals until I found the right one. It was almost too much for me and my family but we had to keep going - what is the alternative?. A skin and muscle biopsy taken when I was seriously ill a couple of years ago changed everything and although it didn't pin point what the disease was, it showed I was seriously ill. I still had to refer myself to the Lupus centre though as no one had seen results like it. St Thomas's have diagnosed b d (this of course can always change) but I have other compications alongside it which they haven't come across. I also have allergies, intolerances and polychondritis and costochondritis.

Please remember that we understand just how awful this thing is and somehow we go on to fight another day.



I was supposed to have an appt this Friday with a hand clinic. I got a message on my answer machine, to say the consultant had changed his mind and thinks it is best that I am referred to another hospital....we don't know why, but this is ridiculous. I had a possible fracture and injury in oct/nov last year and having to wait ages to get to see a hand person....once again I am going to end up with a permanent injury, disability to add onto to existing ones. I am cross because that consultant was booked months ago, and if they thought the clinic was not suitable or I am best seen elsewhere, then they shoudl have said back then. Or, they should have seen me anyway as the appt is so close and then advised me where best to go. It is a shame as well that they are not allowed to do cross I had to go back to my GP, for a third referral for the hands. Not having much luck as the first letter went missing, the 2nd letter got me an appt but now its cancelled....

I have had everything excluded diagnosis wise except behcets, as is normal for that disease. I was under good hospitals in the past but still had problems where my symptoms were way over the top and they kept saying that even for Behcets, it did not seem normal etc....but as mistakes had been made I am like a hot potato....

I prefer not to deal with hospitals, but at the moment I really need to as I am getting less and less use out of hands each day and it is restricting ability...

For folk like us, being online is a lifeline....but I can only come online occastionally at the moment and type in one finger....and am worried I am going to end up with not even that.

I am thinking about going to neurology at the Royal Free....have you ever been there and seen them?

I do not trust anybody, and strongly believe that getting back into hospitals, even if necessary, just leads to upset of the condition and makes me always have to do blood tests and things and I cannot tolerate needles without it rotting into holes....


I haven't seen neurology at the royal free but I know someone who does go there and they are doing the best they can but she has a disease that they have never seen before, and the drs there are the best of the best. I am so lucky now that St Thomas's do all my referrals and each time all the consultants consultatation letters are sent to all the drs named on a long list so they can cross reference.

I understand about going into hospital as they make things worse as they don't listen to me and they say that I can only give 2 symptoms. They cannot deal with unusual illnesses.

I hope that you get to see someone who can help you soon.



H erssie

Was there no reason given for this change? You could contact the consultants secretary and ask why and explain your dissapointment.

The consultant may agree to seeing you anyway or may explain that the new referral is to a better consultant for your is worth a try.

It does seem like the Centres of Excellance might be the way to go because you will have the access to many of the consultants you need [including a neurologist] under the one roof.

Perhaps you could ask either the consultant or G.P for a referral to there. If you see your G.P ask for a double appointment so that you won't be so rushed and can also discuss more symptoms.

I am also under the Lupus Clinc at St Thomas and they are good there and as janh says, they also send letters and have telephone consults with my other Doctors who are at my Local Hospital. I also have my own medical file with letters and test results and take it to all the appointments I go to.

Hope some of this helps



There is no way of talking to the consultant's secretary, I tried and you just get re-routed to the appointments reason was given. My GP said the only thing to do is to get on with a new referral right away to avoid further delay. What annoys me is the wait, this will be like starting all over again and put me back about 2-3 mths. He cannot guess at the reason this has happened.

I am also annoyed because that appointment was made a couple of months ago and at that time, the consultant could have said if it was not suitable. However, GPs can no longer refer you to a consultant/hospital of their choice where I live. They refer you to a central appts place or discipline, in my case it was musculo-skeletal referrals and appointments, and then the admin staff there or physio staff decide which consultants are most likely to help your problem and have an option of hospitals in this trust. If for any reason the patient or the clinic cancels the appointment they normally make a new appt in that same clinic but are not allowed to do cross referrals to other consultants at different they made an appt which they thought best, obviously the consultant did not look at or assess the referral letter until 4 days before the appt even though the appt was booked by a central appts service months ago, and he for whatever reason decided not to see me tomorrow and has sent a message to me to go back to my GP but this is not a cross referral, it means starting all over again with a new clinic, consultant and hospital.....I just hope they don't decide to cancel it too.

If I was a normal patient who fell over and fractured their hand or other injury, I would most definitely have been seen very soon after the fall and know what was going on. But this way, more damage gets done in the long run because you get passed around.

This has happened to me before when my whole arm caved into a massive hole, and I got passed from orthopaedics to neuro, to ortho, to plastic surgeon to immunology to ortho, to neuro to ortho to plastic surgeons.....and it went like that for 6 yrs with appts about 3 or 4 mths apart or longer, and each time people looked at the massive hole, decided they were not the best to help so I got wrapped up and sent home. Each person assumed that someone else was monitoring it, and that I was at least being seen. One consultant wrote to my GP and suggested that it was suspicious and suggested I was hospital hopping because I had seen so many people. My GP never corrected him and explained it was not my choice to keep getting new appts and he made assuimptions that if a consultant had seen it and done nothing, then there was either nothing to be done or that it was not that urgent. Eventually I saw a physio last year after 6 yrs and was told it was too late to straighten my arms or get function back and that it should have been done years ago.

My GP says nothing can be done for my injury this time because of Behcets and that there is nothing I can do but wait until I get an appt. He did request an urgent one, because I have been sent round the houses a bit but says he thinks it will be at least 2 mths before I get one and we will have to wait and see. He thinks there is nothing to gain by trying to find out why a clinic appt was cancelled and its just best to get a new one.

If I am not seen until April, then it will be nearly 6 mths since I fell over, had a suspected fracture of the metacarpals. Having Behcets or something complicated should mean a patient is seen to more quickly because of the damage it might cause, it should not result in a person being sent round the houses and hugely delayed. It is almost like because I already have disabled hands and arms from previous complications, that people are thinking ''oh well, this is nothing new, she cannot use her arms fully anyway''.. I was told that normal patients would have been referred to A and E but that because I have Behcets which is a chronic long term condition, that acute management of injury is not appropriate for me so I must not go via A and E. This is why I followed the route the GP advised. I now wish I had gone via A and E as soon as I had fallen because I would have seen a consultant by now instead of just had my referral going round and round via admin staff.

I am so frustrated because these two fingers,affected by the injury are the only 2 fingers that have any feeling or normal function on that hand. Now they cannot be used, bent open or touched without extreme pain, I am having to use the other extremely painful and partially paralysed ones. That should be more reason to be seen right away. The GP says it looks exactly like a fracture that has healed badly, and says it might turn out to be that, in which case it would need to be fractured again and reset.....if that turns out to be the case I will be really annoyed.


. Hope you have got some answers by now but if not, have you thought of just going to A&E at the hospital who did the op? That is what I would do and then take it from there.

Anyway, I do feel for you as it has taken me 5 yrs to get to neuro which is in 10 days time!!!!!!

I do hope I am not jinxing

Do let us know how you are getting on and if you have had your appt yet. Whereabouts are you I. The country ,I am in London.

Hugs and smiles



I finally have an appointment to see an orthopaedic consultant next Monday, aftger going around and around in circles.

They completely messed up another of my appointments, thinking that my neuro Behcets appointment was about the same thing so cancelled it, I have to start on that appt again, cos I went nmb and weak down one side last July and had an appointment to see a BD expert, doc Kidd in the pipeline, but apparently they have either lost that referral or cancelled it, and think that seeing the ortho guy is good enough for my right side.....although they were two of the many things I need to be seen about.

Thanks for enquiring Billy....I am in London too. Going to the Royal Free next week.

Used to be under Barts and the Royal London



Well, good luck next Monday and do let me know how you get on. I go the pain clinic review next Tuesday, after dropping hubby at same hospital for his new hip op. then week after ( fingers crossed ) to see neuro consultant. I feel like I spend more time at docs and hosp than the I am under Hammersmith have been for 19 years now. But many things have changed within the NHS, some good but a lot not so good.....that's what they call progress I guess!!!!

Anyway I await your next instalment.


Billi x


Just put up a new post about my appt....partly waste of time, as basically yes, looks like I had a fracture, which has now healed badly, but need another xray/scan and will not know until end of May! I had an appt with a hand surgeon in Feb who cancelled his appt, and told me I was better off being seen at a different hospital in a specialist hand clinic...and all that happened was I was seen in a 'normal' fracture clinic, but still not getting a proper xray and scan until at least 9 mths after the accident and fracture occurred....a bit ridiculous. This delay in getting seen for a normal type injury is only due to the fact Behcets is mentioned on file, which makes no difference to the treatment I eventually receive but means I have longer delays than a normal just is not right.

He did mention that my hardened tissues and other stuff look sclerodermic....and wants me to see his colleague to pursue options for freeing up my bent arms and hands.....but I posted that as a new post about scleroderma.


So sorry you are having to go through all this, it really doesn't seem right or fair. I can only hope something will come up trumps for you. Key you know how I get on next week!!!!!

Take care



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