Partner Tentatively Diagnosed

[cottontailcat]

I'm dealing with doctor frustration like never before!! I personally suffer with Interstitial Cystitis and I feel I'm pretty used to dealing with doctor silliness, but I don't understand this at all.

About 6 months ago, in October 2016, my partner (19 y/o female) began experiencing abdominal pain and weakness/numbness in her hands and feet. We went to the hospital during a particularly bad day with abdominal pain and, after an ultrasound, they found some small gallstones. They put her on a waiting list to see a surgeon.

The abdominal pain was constant by November - 24/7 for months, occasionally getting bad enough to warrant hospital visits. She'd complain daily of pain around a level 3-5 out of 10, and we'd go to the hospital if she ever made it to 8-10. She lost her job in January because she couldn't go to work anymore. The abdominal pain had turned into abdominal and chest pain, then back pain, then leg pain and weakness; the numbness and tingling spread to her legs and feet.

In January an ER doctor decided she had Hyperventilation Syndrome because she was breathing shallowly, despite the fact that her symptoms were the same when she was able to breathe deeply. She was subjected to exposure therapy in which the therapist attempted to invoke feelings of anger, fear, pain, etc by many methods including bringing up past traumas, to teach her how to deal with them and therefore "cure her 'HVS.'"

Last month, she decided to stop seeing that therapist because her depression became utterly unbearable (she's dealt with depression, anxiety, PTSD, dissociation, and BPD for years) due to the dread and guilt/shame/sadness caused by the "therapy."

On April 4, she had surgery for the gallstones that doctors were insisting caused all her symptoms. At this point, her pain levels were 5-7 every day, and she spent most of her time laying in bed, absolutely miserable. She took Tylenol with Codeine and Aleve multiple times a day. One doctor prescribed Tramadol and we had to go to the ER due to an allergic reaction (extreme lethargy, loss of motor skills, loss of cognition) so she hasn't had any other pain medications. Unsurprisingly, the surgery did not solve her pain. She was sent home from the surgery on the same day with no pain medication!!!

Two weeks ago, she purchased her first cane. She was finding herself unable to manage even walking into the store to buy something, she'd have to hold onto shelves and looked pale and exhausted when she was done. She's now using store provided wheelchairs when available and the cane the rest of the time, but she still needs to take 2-3 naps every day.

Last week, we had an appointment with her doctor. The doctor listened to her symptoms - abdominal pain, leg pain, back pain, hand and foot numbness and weakness, leg weakness, eye pain in light, headaches, constipation and diarrhea alternating, nausea and vomiting after every meal, extreme sensitivity to touch (especially rubbing!), pain when urinating, genital/pelvic pain, painful sex, pain when hot or cold things touch her, confusion and trouble remembering things/keeping her head clear, depression, anxiety, suddenly worsening eyesight (unable to read the TV subtitles even with her strong prescription glasses on) and hair loss (her long, beautiful hair is falling out in chunks of about 30 hairs at a time - it's not noticeable on her head yet, but it is every time I run my hands through her hair!) The doctor then checked her tender points, which sent her into tears, moaning in pain.

Initially, the doctor implied that since she is celiac, if she completely stopped eating wheat her symptoms would all go away. She's been diagnosed by biopsy at age 5, and occasionally "cheats" and eats wheat. She's done this for years and never had these problems AT ALL before!! The doctor then said that she'd run a test for a UTI and to check her thyroid, but she believes my partner has fibromyalgia. The only thing she's willing to do for her is prescribe Elavil (amitriptyline) and told her to exercise and sleep 8 hours at night.

She doesn't sleep for 8 hours because she wakes up moaning and crying in pain multiple times a night. It's also very hard to exercise when she can't walk far, but we're trying, by going to the mall and outside when it's nice to walk around at a good pace!! Her pain levels are usually around 6-7 every day, and she cries from pain frequently. She's miserable not being able to do the things she loves.

My concerns are:
1 - That she's worsening constantly and is beginning to admit she may need a wheelchair purchased in order to do things like go shopping and complete the tasks she needs to complete daily. Is this normal for fibro? Is there really nothing we can do?

2 - That the doctor says there's nothing more to do but Elavil, exercise and sleep. How can she survive the rest of her life in pain this severe, unable to walk on her own? She's always wanted to be a homemaker and a mother, but she's feeling now like she'll never get to live her dream.

Does this really sound like fibromyalgia? Is this really all we can do about it? Sorry for the length!

 

[vickythecat]

That is a long list of symptoms she is suffering from. Most of them are indeed what we all here complain about. However, in my opinion, the sudden onset of all of these symptoms is what makes it not sound like fibromyalgia, but this is from personal experience.

I can only talk from personal experience at the end of the day. As difficult as it is, you have to let the doctors do the rest. You do have to be a very intelligent and informed patient. And a very articulate one as well. For this I advise a pain/symptom diary. Demand a general check-up - how are the blood, urine, stool tests? Are there any abnormalities there? Fix those right away (usually simple things like vitamin/mineral deficiencies). Check whether any symptoms are getting better.

I also suffer from multiple mental illnesses (BPD, PTSD, severe social anxiety and general anxiety) so life with those alone is tough enough. But it is so so soooo very important to tackle them as well. So if you can, see a therapist asap. The amitriptyline can also help with the mood disorders, as well as the pain, so give that a good try. It is important to give medication a good chance each time. To outweigh the side effects with its effects to heal one's complaints.

At the meantime, it is so important to maintain a healthy lifestyle. I know it is said over and over and over again, but it is the simple truth. Eat well, exercise as much as possible, go outside, sit in a park in the sunshine, do things you enjoy.

And as a caring partner, let her know you are there for her. Listen to her, encourage her to talk to you about what is going on in her mind and find together methods to fight the inner demands we all face as mental health sufferers.

For many of us, the truth is that it took us many many years to finally get a diagnosis. And for almost most of us, that also meant that we had to adjust our goals in life. Accepting a chronic illness is tough, but it simply has to happen so that you can see 'the other doors opening up' and continue to live a fulfilling life.

 

[Sagey]

Hi Cottontailcat,

It's hard to say whether this is Fibromyalgia. The onset of abdominal pain could be related to something else. The fatigue and tenderness to touch and pain are some of the symptoms of Fibro.

She's young But that doesn't mean it can't be that But to be so severe that fast is unusual.At my worst yes I thought I might have to use a wheelchair but I walked when I could.I would have her rest as much as needed.
Stopping work was a good idea if she was not able to function and was in so much pain.

I think she should see other specialist to rule out other diseases.Maybe see a nuerologist to rule out any neurological problems. You did not mention if she had any past car accidents or injuries to her neck or back.

I would make sure he checks for any herniated discs or any spine injuries.You just never know what could be causing the numbness and tingling.
I would also see a gynecologist to rule out any gynecological problems that might cause pain or pain during sex. I had fibroids when I was diagnosed with Fibromyalgia and had know idea why I had such bad abdominal pain, so u never know.My pain meds masked my symptoms,and eventually couldn't urinate and had surgery to remove them.I was severely weak with the fibroids and Fibro.

All these medical things should be ruled out. And then you will know that there are no other causes.

The other important thing is controlling her pain. You don't want something so strong where it would mask what is really going on, but she can't suffer either.

So finding something to help her is important also.

I hope she can get a diagnosis.It can take a while to find out what is really wrong.

Wish u luck

Sagey

 

[Chinodera]

:O Oh my. Hope everything is okay.

 

[diamond]

This does sound very similar to my fibromyalgia...i so feel for her and even though she and you are strangers i send you both the biggest hug.this is such a massive shock for you both and please dont give up searching for better treatments.

Elavil is the first line standard treatment doctors try..but if your girlfriend sees a rheumatologist there are many other methods of pain relief to try. There are anti epileptics gabapentin and lyrica...other anti depressants like cymbalta and then lower level mixtures of mild to moderate opaites based pain meds with codeine at the lower end and while needs supervision and great care some doctors will prescribe higher strengths for patients who dont respond to all or some of the aforementioned.

Tramadol a synthetic opiate and muscle relaxers plus various sleeping medications can also be tried.

I managed for years without pain relief so i am not a great advocate of jumping straight into multiple medications and still have a great dislike of them tbh but at a certain stage you really have no choice but to just keep trying and get some quality of life back.

Your girlfriend does sound to have been hit quite hard and i know what its like to be crying in pain....please believe while it might be a long road you need to keep pushing for specialist treatment and that a drug or combination of drugs may well get your girlfriend some good relief.

Like other members suggest i would recommend both rheumatologist and neurologist and gyny all working with each other to rule out other causes...maybe a full MRI and all blood work ...although my fibro didnt start to point i could hardly walk i was very limited and even on good days 1 hour of walking was my max..many days was just getting around indoors or garden in small bursts....i also had pain all over where as some sufferers have regional pain and days with less or no pain in some parts of their body.

If it is fibro we are all different....rest is VERY important in the early stages as is lowering stress.... very hard when you are in so much pain and life ahead feels so frightening...but where ever possible reduce other stresses and grab small pleasures like a little fresh air, a gentle stroll, sitting in the sun or a relaxing movie or music.

Your love and support will be invaluable i promise you that and i applaud you for coming to this site looking for answers. Welcome.

 

[diamond]

Welcome. duplicated post