Need your opinions (Help please)

All your fibromyalgia experiences, questions and answers.

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Need your opinions (Help please)

Postby Scott87 » Fri Oct 10, 2014 6:51 pm

Hi Folks,
Im posting on behalf of my fiance who was diagnosed roughly 6 months ago with lupus, lupus nephritis and more recently fibromyalgia. Her lupus has been calming down and her bloods have been looking good over the past few months with the use of pred and other steroids but this week she has been taking muscle spasms like nothing ive ever witnessed before. She has been in hospital now since monday and roughly every 2-3 hours she is taking severe spasms, the most severely painful ones seem to be on her back and leg, other times its just her arms or feet. These spasms would last roughly 15-20mins and during that time she is screaming with pain, sometimes passing out for a few seconds and losing control of her bladder quite frequently. After each episode she would be that exhausted she would sleep for a few hours and wake up fine again but still with her normal cop-able fibromyalgia pain.

The first few days she was given diazepan, morphene and paracetamol for pain through an IV line during the spasms. The past few days the nurses refused to give diazepan without doctors orders (using nothing but paracetamol each time a spasm occured) but the muscle spasms were that sore that after the episodes he muscles would still be very tense almost like they're locked, her rheumatologist has now put her on a 10 day diazpam prescription to see if this will ease things any.

She had a great nites sleep the past 2 nites since the rheumatologist increased her amatripilyn to 30mgs at nite, but it just seems that the severe daytime spasms are still comming on as strong and as repetitive as ever. I just dont know how much more she can take, she's only 26 years old and when you hear your fiance screaming she would rather die than stick the pain is hard. Im trying to stay positive and reassure her during each spasm that its only going to last for 10mins.

So i guess im just on here to see if you guys have ever experienced spasms as bad/continuous and lasting for 5 days now like this. If so what pain relief were you given for the spasms and how did they control them?
Last edited by FluppyPuffy on Fri Oct 10, 2014 10:27 pm, edited 1 time in total.
Reason: Split into smaller, clearer paragraphs for easier reading.
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Re: Need your opinions (Help please)

Postby Hellyn » Fri Oct 10, 2014 7:15 pm

poor girl and poor you to see her in such a state. i feel for you.
has gabapentin been mentioned?
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0014677/

it may help her it may not but for some of us it is a god send from the neuropathic pain.

all the best to both of you. :goodluck2:
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Re: Need your opinions (Help please)

Postby Hetty » Fri Oct 10, 2014 7:32 pm

Just a thought, have a chat to her doctor and ask if her calcium levels have been checked, as low levels can cause severe spasms.
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Re: Need your opinions (Help please)

Postby heatherjswiegers » Fri Oct 10, 2014 7:38 pm

Hello
I hope so sorry to hear about her pain.
I have never experienced spasms that caused me to scream.
My husband has tried to explain to me how hard it his for him to feel helpless and no be able to do any thing to help me. He has often phoned the doctors with out me knowing, explaining that it is not fair to leave me in pain. I know that I get frustrated with my condition but I can not imagine how our partners/husband's feel.

I do suffer from spasms in my arms and legs, I have at times cried for hours. MST is slow release morphine, I take 50mg twice a day, this has helped, before I was given the MST I had to wait till I was in pain to take the liquid morphine. Now I have pain relief before the spasms start and top up with oral morphine once the spasms start.
I take 150mg amitriptalyne, 3000mg Gavapentin, diclafenic and the list goes on.

I wish I could get away with it less medication. Every one needs different amounts of pain meds. The doctors try to keep the patients on low doses of medication so that there is levels for us to go if we need higher doses.
I was also prescribed Baclofen, it is a muscle relaxed t that neurologists prescribe. My GP prescribed it for me.
These are all very frustrating and painfull illnesses/defenses you are talking about. I do not have lotus so I do not know what the symptoms for pain is.
I will keep both of you in my thoughts and prayers. I wish I could do more for you.
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Re: Need your opinions (Help please)

Postby iblinkin » Fri Oct 10, 2014 7:42 pm

Hi Scott87, sorry your girlfriend is suffering so badly with this illness and hopefully i can offer some relief for her. I also have fibro, actually all my life and have spent countless amounts of money, time and energy trying this and trying that as well as all the drugs the Doctors have given me. I have also delt with these horrific spasms to the point that it fractured my one rib back in 2009 and they have continued with each year that passes.

The one thing that the Dr's. don't tell you is that us fibro patients have to be careful with our mineral intake as our bodies don't regulate things the same as other people do. I still get the spasms but i have improved by taking a mineral supplement (Magnesium and potasium are both very important!) please look up these two items and read about what would be best for her and have her stay away from caffeine products like coffee, tea and colas as caffeine has the ability to stop the minerals from absorbing into our bodies and these minerals are extremely important for the spasms and if she smokes.. well that's just the worse thing for this illness as we are highly sensitive to chemicals (including perfumes) and we all know that cigs give off an incredible amount of chemicals.. somewhere in the neighbourhood of 4,000, yikes!

I hope the Dr. hasn't put her on a diuretic as that will only make it much worse as diuretics wash a lot of the minerals out of our bodies and causes even worse spasms.. that's how my rib fractured! I hope this helps her some and please remember i am not a Dr. and what works for me may not work for someone else and she should talk to her Dr. about this as he/she should know what she is taking, but keep in mind a lot of Dr's. don't believe in this method of treating us for this condition and prefer to just give us drugs. Also have her vitamin D levels checked if she hasn't done so already as they are usually very low with us as well. There is a help section here that you should take a look at as there are some really good tips there that may help as well! Good luck and all the best to you both!
Last edited by FluppyPuffy on Fri Oct 10, 2014 10:30 pm, edited 1 time in total.
Reason: Split into smaller, clearer paragraphs for easier reading.
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Re: Need your opinions (Help please)

Postby iblinkin » Fri Oct 10, 2014 11:22 pm

Thank you FluppyPuffy, I'll try and do that from now on. If i remember lol. :-D
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Re: Need your opinions (Help please)

Postby Scott87 » Sat Oct 11, 2014 2:04 am

Thanks so much folks for the replies, I'll definitely ask about the gabapentin drug, magnesium and calcium levels, they are all options that have not been considered yet to my knowledge.

Her consultant (rheumatologist ) does seem to have a good reputation and he seems to think that anxiety is playing a big part in this and due to her recent diagnoses. I just find this hard to believe but I'm no expert.

She has been experiencing anxiety like symptoms leading up to this bad spell. She told me when she walks into places with crowded people she gets panicky and feels like the room is closing in on top of her. Her first episode started when she was having and eye test on Monday, again she felt the room was closing in then felt faint and started the spasms.

I'm just hoping they aren't linking this to her episodes incorrectly, and when the 2-3 hour window comes when she is not taking an episode she is talking\jolking and laughing with the family. Even after nites of good sleep she would awaken fine and for a few hours be great, then all of a sudden she feels a headache comming on or tightness or restless feeling in her chest and arms, then straight into severe painful spasms.

We are both grateful after reading your comments that this has been experienced by you guys before and gives us some peace of mind that there is light at the end of the tunnel, thanks again folks much appreciated
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Re: Need your opinions (Help please)

Postby rubes » Sat Oct 11, 2014 12:02 pm

I take 30mg diazepam everday, the spasms are terrifying, they are addictive but my doctor has given them to me anyway, they really do help.
Argue her quality of life without, it's disgusting.
Give her my love Love x
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Re: Need your opinions (Help please)

Postby Queenie_70 » Sun Oct 12, 2014 8:18 am

I am so sorry to hear about the pain that your fiance is dealing with at such a young age. I too developed spasms that the doctors don't seem to know where or why I have them, but through some research I have found that partial complex seizures may, and I only say may, be the cause. I have been put on Valium, (Diazapan), but only a months supply as they are addictive. They calmed down the spasms to the point where the pain was decreased, yet the exhaustion is still there...whether that is the medication or the spasms at this time, unfortunately I am at a loss. An EEG might show if she is suffering from seizure activity, and that may open a door to medication that could help, or the Diazapan could be at least a small comfort.

Keep strong for her and yourself. xx
"Life is not measured by the breaths we take, but by the moments that take our breath away."
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Re: Need your opinions (Help please)

Postby madchickenlady » Mon Oct 13, 2014 5:27 pm

It also depends on her doctors view of Fibromyalgia as some of them don't think its real, I work for the NHS and have listened to doctors who I work with talking about people with Fibro and how its all in their head or they have social issues that are causing the pain, they don't know I have Fibro because I don't want to see that look in their eyes when they talk about it, Lupus however is a different kettle of fish and they should take that seriously, I hope you get some answers soon and that your girlfriend makes a speedy recovery
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