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Talk about every stage of pregnancy, from early symptoms to preparing for birth.

A complete nightmare!

122 replies

morrison1976 · 27/04/2011 20:46

This is me and my wifes first baby, and to be honest, it has been a complete nightmare for my wife. My wife is currently 20 weeks pregnant. For the first 15 weeks, she felt sick all the time, day and night, then about 4 weeks ago, she started to get pains in both hands and feet.

At first, her feet were worse, and she could only walk for 10 mins before her feet became so painful. Sometimes she will just sit there and her feet would start aching and sometimes this would last all day and night. At the time, my wifes hands would only hurt when she moved them, but the last two weeks, her hands have been so bad, even when she does not move them.She can't sleep at night because of the pain and the pain is there 24/7.

We went to our midwife and she said its most prob fluid, and she booked us to see a Physiotherapist. We went to see the physiotherapist and She asked loads of questions about the symptoms and check her hands and feet. She said it was worrying that my wifes feet and hands were really hot, and the fact that she couldn't straighten her hands or make a fist. She said my wife might have severe carpal tunnel syndrone, and said its quite rare for a woman who is only 18 weeks gone to have these symptons.

We told her that our doctor was going to make an appiontment to see rheumatologist. She went to check to see if they got my wifes information, and it turns out that our doctor did not even bother to tell them!!! So the woman said she will sort it out. She gave us some splinters for the hands but they did not work. She said that when we go home, i should get a bowl of hot water, and a bowl of cold water, and my wife should dip her hands in the cold for a while, and then the hot. We done this, and the symptoms did go for about 30 mins, but then they just come back stronger

we went to the hospital. We saw a doctor and she seemed to think that it was carpal tunnel syndrome. She took us to the anti natal department in the hospital. Another doctor came along and done some simple tests with my wifes hands and said he did not think it was carpal tunnel. He told her that she will have to stay there overnight and take a blood test. Also, he said he would get the Orthopedist doctor to check her out.

That night after i left, she was really bad. They gave her some sort of drink and she fell asleep for an hour, but woke up again in pain. In the end, they gave her an injection of Morphine that knocked her out all night.

The next day five Orthopedist doctors came over and done some simple tests. He said he did not believe it was carpal tunnel syndrome.The blood tests came back and they were fine, with no sign of arthritis. He said it was a complete mystery. He said he would get the Rheumatologist to come and see her.

He came and done some tests. He said he believed it was Rheumatoid Arthritis and they would need to do another blood test.

She was in so much pain they injected her with some sort of steroid and gave her 30mg codeine.

They said it will take a few days for the steroid to start working, so she should take the codeine, two every six hours. We have an appointment to see the Rheumatologist on the 5th may.

To be honest, the 15mg codeine did not work, and the 30mg is not working too and the steroid did not work either

I was very skeptical about the steroid because everything they have given my wife has not worked (apart from the morphine) but she can't take that everyday.

My wife was bad again, so i took her up the hospital.The midwife there said there is nothing they can do about it, and we really should not be in the marternity ward because its not pregnancy related, which is a load of rubbish. Anyways, another doctor came and could see she was in alot of pain, so he said she should stay the night.

She was in alot of pain that night and they gave her the drink again and the morphine, but they did not work as well as the first time she took them and the pain was there all night.

In the morning, a doctor came to see us and she said the blood tests came back fine, and she believed that the problem was fluid in the hands and sensitive nerves. She said there is not much they can do, and she will have to wait to see the Rheumatologist. Also, one of the drugs the midwife gave my wife was IBprofen. I asked if it was safe, and she said it was , but not after 24 weeks. Anyways, after two days of taking it, the doctor said we should not be taking it and stopped it straight away.

The sad thing about this, is they don't even know 100% what is causing this. I have had to stop work because my wife can't do anthing with her hands. She can't eat, wash, brush her teeth etc. She cries everyday because of the pain, and night time is the worst time. She said she has never felt pain like this before.

What i do to ease the pain in wrap a frozen bottle in a thin towel and she holds it at night so it numbs the hand and she can sleep. It the day time she has her hands in a bowl of cold water. But as soon at she takes her hands aways, they get so hot and the pain comes back again.

I rang the Rheumatologist today and managed to get an earlier appointment. We need to see him tomorrow, the same day we have our 20 week scan.

I am so stressed over this, and what makes it worse is, i have not come across one woman who went through, or is going through the same thing as my wife.

My wife is in a really bad way, and she is worried that there is nothing they can do about it, but she says she can't take the pain much longer. She said the pain feels like the time she trapped her finger in the car door, but this time its all over her hands and wrist 24/7. Also her hands are so hot and she has a burning pain feeling too. When i use the frozen bottle, the heat of her hands melts the ice quite quickly, thats how bad it is.

I hope we can get some answers tomorrow because there is only so much my wife can take. Im hoping someone here has gone through the same thing.

OP posts:
Are your children’s vaccines up to date?
INeedNewCurtains · 28/04/2011 13:54

"she couldn't straighten her hands or make a fist"

This, along with everything else, makes me wonder if it's scleroderma.

morrison1976 · 28/04/2011 20:09

We, here is the story so far. We went for the 20 week scan, and the baby is fine. We asked the sex, and she said its a girl. Then we went to the Rheumatologist. We were early, so we had to wait for an hour. Because my wife had been walking, and her feet were not up like they are at home, her feet started to hurt really bad, and when that happens, she can't walk.

Anyways, the nurse came to us and said she needed a urine sample. As my wife could not do it herself, i had to go in and do it. Now you see what i mean when i say i have to do everything.

We went into the doctors room. It was the same Rheumatologist we saw at the hospital about a week ago. He was the one who thought it might be Rheumatoid arthritis.

Anyways he said to us that the blood tests came back fine. He checked her hands again. He said he needed to do tests, but it would be hard because she was pregnant. He rang another doctor to ask if pregnant women can use catscans. The doctor was not there, so he said he will see us in two weeks again, plus book us in to see the Physiotherapist. I told him that we saw the Physiotherapist last week, and they referred us to you. He said he will make another appoitment with them so they can do hand excercises with my wife.

I said its been 4 weeks, and we are no closer to finding out what the problem is, and in the meantime, my wife is in constant agony. I said you keep on giving us these drugs, but they have no effect whatsoever. I really lost it with him!

My wife was next to me and she just broke down. She told him she can't take the pain much longer, and he said "well, its not life threatening" I could not believe he said that!

Anyways , he gave us some more steroids ( prednisolone) I told him i was sceptical because all the other drugs they gave my wife have not worked, but could be harmful for the baby.

Im thinking about joining bupa paying monthly because this is a complete and utter joke! My wife can't take much more of this, and nor can i.

My wife is Chinese, and she rang her brother today. He is quite wealthy in China and he told her to come back home and see some doctors. He knows a few doctors in Beijing. Its really tempting because with the doctors here, we are getting nowhere. They are just pumping my wife with drugs, even when they don't know what the problem is!

OP posts:
FrettyBetty · 28/04/2011 20:18

morrison I am so sorry to hear of your ordeal. It's horrible. I would definitely try and pay for private here (may be quicker than China), but also would think seriously about the Chinese offer. You need this resolved.

I am so happy your daughter is fine. It sounds like you really need to resolve this in order to enjoy your beautiful healthy child. I do not know what your financial situation is, but I would really pay for a private consultation. You could ring up BUPA too.

slovenlydotcom · 28/04/2011 20:29

sorry to hear this morrison: I paid BUPA for a one off consultation once; we saw a doctor who then arranged tests on NHS as we did not have a BUPA plan. In the end we paid for two consultations, one at start and one at end to get results.Pricey, but worth it.

morrison1976 · 28/04/2011 20:38

The doctor said he thinks it could be "Complex regional pain syndrome" another condition that is very bad. I reall y can't take much more of this!

I am living in Brighton with my wife. I am currently unemployed but studying IT/webdesign. Im hoping that i can find a place that does monthly plans.

OP posts:
sb6699 · 28/04/2011 20:59

I'm sorry you didnt get any answers today. Could you ask to see a different consultant for a second opinion?

What sloveny did (paying for a private consultation at start and finish with tests done by NHS) could be a solution for you.

If you took her to A&E would she get to see someone else?

morrison1976 · 28/04/2011 21:34

I have almost givin up on the nhs. He said to me that he thinks its Complex regional pain syndrome. If you look that condition up, it says it has to be caught early or it could damage your limbs and spread. Then he says come back in two weeks! Its a joke! Im going to ring bupa tomorrow and see what they say. Mind you, there call centre might not even be open tomorrow because of the royal wedding.

Im just angrey,worried and emotionally drawn. We just want to know whats going on here, and not just guess work while they pump my wife with drugs that have no effect.

OP posts:
Rootatoot · 28/04/2011 23:33

Glad to hear you had good news about the baby but very sorry you got no further forward with your wife's condition. Practical ideas to help...well yes check out BUPA, as might be good to get another opinion. Do as much research as you possibly can yourself. Be really specific on what the symptoms are, if you are posting on any other forums to get ideas/help. Perhaps, if the NHS are not giving you the help you deserve/need, you should check out the complaints procedure with the PCT and/or don't be afraid to get in touch with your MP for help.

You obviously need some practical support as you sound exhausted. If you can ask someone such as MP to help fight your corner then maybe this would be a good idea?

Finally, just wondered whether she had been checked for auto immnune disorders? My sis in law's joint pains (whilst not as severe as this ) were an auto immune thing. Read this thread too about diabetes as I know that causes pains and can come on during pregnancy...might be worth checking out ?health.howstuffworks.com/diseases-conditions/pain/nerve/diabetes-pain.htm

sb6699 · 28/04/2011 23:50

Just a thought, could you post in health asking in the title for a "medic" to give you advice.

There are quite a few on here and diagnosed my carpal tunnel for me while I was waiting on my GP appointment convinced I had some extreme disorder.

Although you cant rely on the internet for a diagnosis, they might have some suggestions on what it might be or how to get more assistance from the consultant who doesnt seem to be the most sympathetic tbh.

Thornykate · 29/04/2011 00:05

Hi, sorry to be the bearer of bad news but the majority of personal private medical schemes are underwritten meaning you aren't covered for pre existing conditions, some employers schemes may include pre existing conditions but setting this up would not happen overnight. Just didn't want you to waste time when I know you want a quick solution.

Paying for a private consultation would be an option if you can find a suitable specialist, or seeing the expert in china.

Hope your wife is feeling better soon it must be awful for you both.

SoloIsApparentlyACougar · 29/04/2011 00:13

Just what I was about to say Thorny re pre existing conditions.

What about seeing a Chinese herbalist/acupuncturist? They are very good, but try to find one that is recommended by someone who has used them.

sausagerolemodel · 29/04/2011 00:17

Sorry I can't give proper medical advice, but from what you've said, it sounds like the only specialists your wife has seen have been the orthopod and the rheumatologist? I wonder if you should ask for a case conference, or for a referral to a neurologist?

One of the problems with the NHS with difficult to diagnose cases, is IIRC that none of the specialities speak with each other initially. You get referred to one and then once they've run all their tests and found nothing, (or come up with a non-specific vague diagnosis), only then do they pass you onto "other" teams for referral.

I would stamp your feet a bit more - and even go back to your GP if you feel that you are not getting anywhere once in the hospital system.

morrison1976 · 29/04/2011 15:53

Well, i was up all night with my wife. The pain in the left foot was really bad. Normally all she does is raise her legs while sitting, and the pain goes away, which tells me its fluid. But she had it bad last night, and she still has it. She can't even stand on the foot. She just lays in bed in agony and all i can do is watch.

I rang the NHS helpline, which was a waste of time because she put me through to a nurse, who really did not have a clue (not her fault)

I am sending my passport of tomorrow to get my visa. The only thing that worries me is because they don't know whats wrong with my wife, i don't really know how flying will effect her. Maybe it will make it 10 times worse.

She started taking the steroids today, 6 tablets one a day for a week, the 4 tablets a day for another week. If they are going to work, then they should kick in tomorrow or the next day, but like the other steroids she has taken, i don't think they are going to work.

About bupa. My dad said the same thing to me last night that they might not take my wife on with a pre exsiting problem.

So, our options are

1- wait for the NHS to sort it out, which could takes months

2- go to China and see someone straight away

OP posts:
yoshimigalloway · 29/04/2011 18:18

I would be surprised if the prednisolene did nothing at all. You can get sero-negative rhuematoid arthritis where the rhuematoid factor does not show in blood tests, they diagnose on symptoms. I chose from the outset to take the drugs that you could take in pregnancy as the most powerful and effective is methotrexate which you can definately not take in pregnancy or up to six months before. It really does sound similar, i used to wake in the night stuck stiff like a statue completely unable to move.

I really hope you find some answers soon.

PoppysMom · 04/05/2011 08:47

Morrison how is your wife doing? Did the steroids work?

morrison1976 · 04/05/2011 20:19

Sorry its been a while, but i just haven't had the time to go online. About five days ago, my wife was in so much pain in her hands and feet. I could not take it anymore, so i rang an ambulance. They came into our house and saw how much pain she was in, so they gave her laughing gas until we got to the hospital, and she did laugh all the way to the hosptital.

Anyways, she was taken to a ward. The forst day she was there, we saw about 5 doctors. They said her case was very strange, and thats why they were finding it hard to find out what was going on. The first thing they said they would do is try and find some pain relief.

They started of with IB profen, coadine,Paracetamol, plus the steriod she was taking. None of these worked, so they added Tramadol. She took 50mg of tramadol, but it did not work very well. When they gave her 100mg, it would make her tired and would take the edge of the pain for about 3 hours. Problem is, you are only aloud to take 300mg a day.

Over the next couple of days, many doctors came to see my wife, but they still did not know what was going on, only saying it was very rare whatever it was.

Yesterday, a doctor came to see her. He believed she was suffering from Complex regional pain syndrome. I think he said hyperalgesia, but im not sure.

Today, she was visited from another doctor. She said they will cut the IB profen out, and stop the steroids she is taking. She will still take coadine,Paracetamol and tramadol, but they will also give her a drug called gabapentin and see how it goes tonight. They are also looking at doing some tests, but they said this could take a while.

I can't believe this is happening to us. I am so worried that all these drugs are going to effect the baby. I asked them if these were safe, and they said yes, but when i looked on the internet, it says otherwise.

At the end of all this, i want us to have a healthy baby girl. I am not a religous person, but i have been praying every night.

OP posts:
Eviepoo · 04/05/2011 21:32

There's not much I can say, but you mentioned you are not religious, and as I am, I can and will include you, your wife and your baby girl in my prayers.

PoppysMom · 05/05/2011 02:43

Oh Morrison, I am sorry it is still not better, however I think having her in hospital is the better place for her.

I wouldn't worry too much about what the web says about the drugs, because your wife needs to get a break and if the doctors deem the medication safe I would trust them.

Also, your baby is 21 weeks now, so I am not sure how much damage medication would do now compared to earlier on in pregnancy.

I really hope that your wife is having a better night tonight.

morrison1976 · 05/05/2011 07:30

Thanks so much for the replies. I am going up there soon, so hopefully there will be some good news. As long as they can get the pain under control, then that would make her life alot better. I am also hoping that this condition will vanish after she has the baby.

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Booboostoo · 05/05/2011 07:45

So sorry to hear about your wife. I have been reading your thread and wishing that I could contribute something useful but I don't really know what to say.

I suppose the only way forward with the NHS is to pester them a lot and get after than until all the specialists start talking to each other.

Another idea re pain relief might be to talk to your local palliative care hospice. Despite the name they don't just deal with terminally ill patients, but because of their expertise in pain relief they see a lot of patients with chronic and medication-resistent pain. They may have some ideas regarding combinations of drugs that haven't occured to the non-specialists in the hospital.

morrison1976 · 05/05/2011 21:23

Well, my wife was let out of hospital. She has to take gabapentin 3 times a day, and tramadol 5 times a day. I am so worried about these drugs, esp gabapentin, but my wife does not have a choice. Complex regional pain syndrome is a horrible condition. The pain is known to be terrible, but i know this because i saw what my wife went through.

So, its either take these drugs, at the risk if them harming the baby, or for my wife to be in horrible constant pain until the baby is born.

OP posts:
nannyl · 05/05/2011 22:34

sorry to read that morrison

rock and hardplace springs to mind Sad
at least she is out of hospital, & lets hope baby is ok in the end. (so many drugs are never tested in pg women for ethical reasons, so lets hope they just havent recommended them, so cant be sure that they are ok)

hope the pain stays away.... it sounds awful

katherine2008 · 06/05/2011 17:57

have been following your story and wishing you and your wife a pain free time. do let us know how you get on. good luck - she is lucky to have you.

Coppernoddle · 06/05/2011 20:16

There's a company up north which my specialist told me about where it's private and they work on a monthly payment scheme and they literally diagnose the condition and then pass you back over to the nhs for treatments, but unlike bupa, it can be existing as that's what there testing for! I was going to use it with my daughter for her auto immune disease. I spoke to them a few times but never used them in the end, but was definitely a better option than bupa and would bemuchquicker than going to china, in fact, I doubt they would let you travel and your insurance would definitely not cover you if baby were to arrive early etc! Give me 10 minutes and I'll have the number for you x

Coppernoddle · 06/05/2011 20:39

Ok, the company is called BMI healthcare, (bmihealthcare.co.uk) 0800 1422303, they operate from the Alexandra hospital. The initial consultation costs between £150- £250, follow up appointments are between £100- £200, blood tests costs £150- £250, scans MRI CTC £500- £700. You can get seen within the week and they offer a BMI payment card where you pay it off like a credit card, to what can remember, you have a year interest free too, then after that they put on interest but don't think it was any higher than a normal credit card. If you can get hold of your medical notes from the hospital somehow, that would help you in the initial consultation and maybe move things along abit quicker! If I can remember, they get you done pretty quickly, no faff!!! It's worth a try! Risking an aeroplane even if they let you on wouldn't do her hands and feet any good at all!! Especially she would have to walk round every hour and china's a long flight!! But my husband used to work for airlines and he said there's no way you would be allowed on the flight! Hope it's useful for you! Let us know how you get on!! X x best of luck and regards to your wife too, sounds very traumatic for you! My husbands going through a similar thing with me! Very eventful pregnancy too!! X x

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