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Posted By : Lisabeans - 7/24/2017 10:42 AM
Sorry to vent but no one really understand but you wonderful people. I followed the orders of the second rheumotologist I saw. I stopped the arava and increased the amitriptiyne. Its been over a week. Well I am in horrific pain. I have burning pain, swelling of my hands and feet, pain down my legs, ankles feel like they are sprained upon walking and standing. I left a message for the new rheumotologist today. I don't know what to do to relieve some of this pain. I had pain while on arava but no where close to this much. I am also so extremely exhausted. I spent most of the weekend on a reclining chair. Could this doc be wrong and I do have an ai issue as well? I feel so lost.
Lisa
Ulcerative Colitis (remission)
GERD Reflux taking Zantac
Recently low positive ana. Taking Leflunomide (arava).
Also taking Amitriptyline to prevent migraines.

Posted By : Sherrine - 7/24/2017 12:35 PM
I'm so sorry you are struggling so much. The swelling of your hands and feet isn't t typical. Have you been eating a lot of sodium? If I eat even some 50% less sodium potato chips, I will get swelling in my hands and feet and that can make them achy too. Drink a lot of water to help flush out anything that might be causing this and see if that helps. Water is always healthy and most of us aren't fully hydrated

Have you tried over the counter pain relievers? That's what I use. I didn't want to take the high powered meds they give for fibro so I tried over the counter things first. I do take ibuprofen every day and I take three tablets at a time...600mg. Two tablets don't touch the pain but three give me good control! I also take extra strength Tylenol...two tablets...when I take the ibuprofen. You might not need these but I do.

I also take magnesium malate and vitamin D3 because deficiencies in these can cause pain. Many people...even healthy people...have deficiencies in these because of diets and not being in the sun much. I live in sunny Florida but yet had a vitamin D deficiency because I always wear sunscreen when out in the sun. That blocks the vitamin D from being absorbed and there are very few foods that contain vitamin D.

I know it's difficult for you to walk, but do get up every so often. Sitting and laying make the pain worse and you will be stiff as a board. In Fibro 101 there are some stretching exercises that were developed for long flights to help prevent deep vein thrombosis but work great for fibro. These are done siting down and at least this movement will help you. Since you are sitting a lot, do read all of Fibro 101. There is a ton of good info there.

I hope some of of this will give you relief until you see your new rheumy. Do ask about taking a muscle relaxer. My rheumy gave me Robaxin and it has made a significant difference in my pain. I take a fraction of what was prescribed, too, so I don't have the typical sleepy side affect. I need to be able to drive my car.

Lastly, yes, you can have an autoimmune problem going on along with fibro. I have four autoimmune problems along with fibro...Crohn's disease, diabetes. Ankylosing spondylitis, and autoimmune inner ear disease.

Try not to worry so much. The stress is adding to your pain. Keep trying various things until you see what helps you be in control of the pain. The rheumatologist should be able to help with this. I was fortunate that my Internist helped me and agreed to try the over the counter things. I'm glad I did!

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Posted By : Lisabeans - 7/24/2017 2:01 PM
Thanks. The rheumy told me to let the amitriptalyne work longer before changing anything. My feet seem to swell if I am on them too long or if it is hot out. My hands swell from heat and sometimes for no reason that I can see. I have not tried over the counter products yet. I didn't want to interfere with the medicine they say I should take. This rheyny feels my colitis could be causing some of the symptoms but that has been in remission for years and my GI doctor does not think so. I try not to stress but for over 2 years I have been researching lupus and r/a and thought fibro was ruled out. Now they say fibro and are leaning towards ruling out lupus and r/a. Plus I also have to take care of my husband disability claim while trying to work and care for my 4 kids. My oldest (15) has been remarkable in helping out. I am blessed to have him but then I stress that I am robbing him of his teenage years. I just feel so lost and confused and exhausted.
Lisa
Ulcerative Colitis (remission)
GERD Reflux taking Zantac
Recently low positive ana. Taking Leflunomide (arava).
Also taking Amitriptyline to prevent migraines.

Posted By : Ljm2014 - 7/24/2017 9:02 PM
I am not familiar with the arava,

But there can be almost rebound effects in changing medications

Have you tried anything topical on your ankles? At least until the dr can figure out your meds..also do you know what over the counters you can use with your specific issues?

One thing i find with chronic illness , is that we cannot always wait on the dr for 100 per cent help..

My dr helps me about 50 per cent, but i have found self help measures to help myself also..

My daughter who is pretty healthy has a swelling ankle issues, after many tests nothing shows up..but while we were on vacation i had her try my acupressure pillow on her ankles..and within minutes she could feel the swelling relieving..believe me when she got home..she was fast to order the acupressure mat and pillow..

My experience with the acupressure mat and pillow, has been reduced pain, calmness and deeper sleep..

When i feel i am going into a flare..i head straight to it..

Lj

Posted By : Lisabeans - 7/27/2017 7:44 AM
Thanks. I have not tried anything besides elevating my feet when they swell. It is not just my ankle that swells, it is my hole foot. My toes look like real little piggies!!!! I have tried over the counter naprosyn and get some relief from the pain. I have had a rough week with the pain. I also have had a low grade fever this week (99-100) but it seems to only be slightly elevated at night time. I end up feeling like a have the flu, that is why I started taking my temperature. I also am going for a consultation for aqua therapy this afternoon. I just feel like it has taken so long to get not much help.
Lisa
Ulcerative Colitis (remission)
GERD Reflux taking Zantac
Recently low positive ana. Taking Leflunomide (arava).
Also taking Amitriptyline to prevent migraines.

Posted By : Luvzminis - 7/27/2017 11:44 AM
I had a problem with one ankle swelling, mostly around the ankle bone, a few months ago. I have a feeling I somehow injured it while in the garden, though I don't remember anything specific.

Elevating my foot when I could helped, and I also put a frozen pack on it for a short time, a couple times a day. Also had to wear a different pair of shoes for a while, as it was causing irritation from rubbing there.

Sometimes, we get the weirdest things going on and don't know why!

Years ago, I was on amitriptyline for chronic diarrhea, for several years. It was incredibly drying (which is why it helped my condition) but left me so sleepy. I'd take it before bedtime and still be sleepy the entire next day til evening! I took 50 mg each night. Could this explain your exhaustion, do you think? Maybe you could run it by your doctor?

Hope things are better soon, Lisa. Best wishes and prayers.
"Pray, hope, and don't worry."

St. Padre Pio

Posted By : Lisabeans - 7/29/2017 3:14 PM
Thanks. I have been exhausted long before the amatriplyne . I did a sleep study and found I have mild sleep apnea. The doctors say that could be why but it is so mild that I didn't need to do anything for it. I so elevate my feet when they swell. I just have not gotten any relief yet from the amatriplyne. I also worry that one rheumy says it is inflammatory and the second one says no. The pain is as bad as it was before I started any medications.
Lisa
Ulcerative Colitis (remission)
GERD Reflux taking Zantac
Recently low positive ana. Taking Leflunomide (arava).
Also taking Amitriptyline to prevent migraines.

Posted By : straydog - 7/31/2017 8:38 AM
Lisa, I have read some of your threads in the RA forum & am a little familiar with everything that you have been going through recently. Amatriplyne is an older med used off label to treat a lot of different conditions, chronic pain is one of them too. For folks that can tolerate it, it can be a good medication. However, it is a medication that has to build up in your system over time to get to the therapeutic level needed. You have not been on it long enough to see any real improvement, it takes a good month to work, so hang in there. I did look at Drugs.com & swelling of the feet & hands are not a side effect listed. My toes looked like little sausages from the swelling. I too have issues with swelling of the feet & hands. At one time my swelling was so bad I had to wear compression hose. Putting those on was harder than putting a girdle on 2 sizes too small, lol. Now that hot weather is here even my lower legs are swelling, but when elevating your feet be sure to put a pillow under them, they say get the feet higher than your heart.

I am not sure how long you were on Arava, but I do hope your dr did baseline liver testing & periodical testing. I hope you get to feeling better soon. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : Lisabeans - 7/31/2017 10:31 AM
Thanks Susie. I did get blood work done every 8 weeks on the Arava and thankfully my liver is fine. I just really have a gut feeling something other than fibro is going on here. A lot of my symptoms fit both fibro and auto immune but some just fit auto immune. I have dry eyes and dry mouth (but tested negative for Sjornens?) by blood work. Actually outside of a positive ana all my blood work is negative. I do respond well to small doses of prednisone which I was told does not help fibro patients. I am starting aqua therapy today. Hoping to get relief there. I am just tired of feeling so much pain and fatigue. Also this past week I have had a low grade fever (around 99-100). I did start taking it just because I felt like I had the flu or something. I just feel lost and can't really talk to my husband about it much since he is going through his own health problems.
Lisa
Ulcerative Colitis (remission)
GERD Reflux taking Zantac
Recently low positive ana. Taking Leflunomide (arava).
Also taking Amitriptyline to prevent migraines.

Posted By : straydog - 7/31/2017 1:34 PM
Perhaps when you return to the next dr appt the dr will be able to tell you more. Prednisone once in a great while is ok, however, it is a drug that should not be taken long term because of the side effects. Most people will tell you that with steroids, its a love hate relationship. Love how it can make you feel but the side effects are horrible. This is true about Pred & fibro.. I do know there can be false positive ANA, this is not uncommon.

Wonder if you don't have something else going on with the low grade temp. I hope you get to feeling better soon. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : DianeB - 8/1/2017 11:47 AM
Lisa

Welcome to our club.. Not that I would wish these symptoms on anyone, however it is so nice to find the support other members offer.

Aqua therapy (for me it MUST be in a warm pool, around 90 degrees) keeps me going - literally. When insurance plays games, I.e. Occasionally won't approve, many places offer 'wellness' programs..

Agree with other posters observations. If you don't already, please consider keeping a brief log of specific symptoms, along with change in diet, activities, medications, even supplements, etc. (although sometimes I could not find a connection, there were times when I could. & having record of reactions might help your medical team too) ask / read / Be aware of Possible side effects.

a Steroid took me to my knees, literally. Next time I had a procedure I made sure to tell nurses, etc (as I was going to be sedated) NO STEROIDS. Woke up feeling / having similar symptoms, had someone take me to hospital the next day to get copy of report about the procedure. Yeap - there it was. Was so p!$$ed off !!

Let me just say, the next time a similar situation came up, I wrote NO STEROIDS in waterproof marker, ON, the site.

Consider discussing possible side effects of medications with pharmacists as well as doctors.. Pharmacist can advise if there is somethings you can keep on hand in case of severe reaction... Those can occur anytime, long after starting a medication. Happened to me in year 2 of being in the club, while taking a muscle relaxer. Woke up with throat so swollen I was choking on my own saliva.

Would have been better if I had spoken with pharmacists BEFORE it happened, which is why I am posting this to you.

The folks on this site are GREAT! The search feature can be very helpful if you have specific questions.

Welcome again.
Herniated cervical discs & other disc /spine issues, Arthritis, spurs
Injuries &/or pain to/in shoulders, elbows, wrists, knees, legs, ankles
Fibro / myofascial pain, neuralgia, neuritis

Posted By : Ljm2014 - 8/1/2017 1:11 PM
Good info Diane on being careful on meds and their short and long term effects..

Many of us with fibromyalgia, have medicine and or chemical sensitivities..although i do not think we all do.

I have both and have to introduce meds very gradually and usually take lower doses to get the same affect as the next person might.

So we do need to be our own advocate in these matters..

Lj

Posted By : Lisabeans - 8/3/2017 7:42 AM
Thanks everyone. When I was on prednisone, it was to see if I would respond to it. Since I did, my rheumy said I did not have fibro but inflammatory disease. I took it for a short period prior to plaquanil. Then in between medications he put me on a maintenance dose (10 mg, then taper down to 5, 4, 2, then done) for 4 weeks. Since that helped immensely. the second rheumotoglist says there could be auto immune issues on top of the fibro since fibro patients don't respond to such a low dose. He then said I don't have enough symptoms.
The aqua therapy is going well (95 degree pool). It feels great to move in the pool with no pain. I am in killer pain when I get out as well as exhausted. This was my first week so I am hoping next week is better. I go back to the second rheumy on 8/9/17. Hopefully she can figure things out. I still run the low grade fever but it seems to only come at evening or night times. Not sure what it could be. I just also had a spot on my arm removed and am waiting for the biopsy. She said it didn't look like lupus but since it has been there for around 3 years and itches like mad, we should investigate it.
I may venture out to John Hopkins if this doctor does not give me relief.
I do also speak with my pharmacist regarding the medication. She is wonderful. Spots me as soon as I enter the store and asks how I am doing.
Hope everyone has a great day with minimal pain.
Lisa
Ulcerative Colitis (remission)
GERD Reflux taking Zantac
Recently low positive ana. Taking Leflunomide (arava).
Also taking Amitriptyline to prevent migraines.

Posted By : DianeB - 8/7/2017 3:27 PM
Glad you have gone to aquatherapy!

I too relish being able to move around with much less pain.. ('Land' exercises are too difficult) Consequently I often 'do' too much, causing increased pain. That may be what you are doing.

Do you take/sip cool/cold water while in/at the pool ? as I like the heated water, sometimes I stay in too long, get too warm & that leads to feeling exhausted afterwards. I keep several half-fill plastic bottles (old GatorAde or water bottles) in my freezer & top them off with 'tap' water before leaving home (have a whole house filter), & lay it within reach beside the pool. Sometimes I take a second one & leave it in car to drink on way home.

Also, If it is a hot summer day I Take one whenever I am just 'out & about' too.

Re: low grade fever: several years ago I had one for months & went to my primary care doctor who said if I had no other symptoms, she could not help. I was self-pay & asked her to run some basic blood tests & she refused. Hope JohnsHopkins or someone else can help find source.
Herniated cervical discs & other disc /spine issues, Arthritis, spurs
Injuries &/or pain to/in shoulders, elbows, wrists, knees, legs, ankles
Fibro / myofascial pain, neuralgia, neuritis

Posted By : Lisabeans - 8/11/2017 4:04 PM
Thanks. I am only in the pool for an hour session 2 times a week. Plus it is shared with others and I am constantly moving. I drink before it and after it. I did see the Rheumatologist at Penn again on Wednesday. She increased the amitriptyline to 75 mg. Hasn't helped yet. I told her the pain has intensified days after going off the arava. She had no answer as to why that would have that affect on my pain. That is why I feel it is inflammatory as well. She keeps saying how she doesn't treat fibro patients but then says she is convinced that is all I have. I am going to start therapy for depression. I just feel so lost. The pain is horrible right now. Makes working and doing anything hard to do. My feet swell and hurt by the end of the day. My joints hurt, my bones hurt, I get mouth sores. Sorry to vent. I am on a camping trip with my family and feel miserable.
Lisa
Ulcerative Colitis (remission)
GERD Reflux taking Zantac
Recently low positive ana. Taking Leflunomide (arava).
Also taking Amitriptyline to prevent migraines.

Posted By : Ljm2014 - 8/11/2017 5:58 PM
Awww, sorry you are away and feeling so bad..

Is the dr. Basically saying she will not treat your pain?

You may need a dr. who will help you with pain..

Its complex, at one point my dr had me go to a pain clinic, but they just wanted to throw meds at it..meds that were too strong for me, being med sensitive..so i just never filled it..so my primary gives me an anti inflammatory and tramadol, which i can only take low doses, but it does help..turmeric also helps , i use curamed..it helps with stiffness

Our family dr is very much to try different things till you get what works for you. Would your primary doc work with you?

Sounds like the rheumy is copping out?

Sure hope you can get a dr..working for you!! A lot of people with fibromyalgia get no help from anti-inflammatories, but i sure do.. have had a few injuries over the years so maybe thats whats its really helping..before my dr. Perscribed one.. i took motrin..it helped a lot..i only changed cause he wrote for a cheaper kind..

Are you able to take anything over the counter?
Do you use heat?

Lj

Posted By : Lisabeans - 8/11/2017 6:54 PM
I use heat especially when driving. I did ask her why she wants me to come back if she feels it is just fibro. She said they get too many inflammatory cases to take on fibro. The doctor who consulted at the end of my first appointment said it may be inflammatory as well but blood work doesn't say so. So that is why they accepted me. Then she said I am welcome to go else where to get inflammatory medications. She won't prescribe anything. I just feel like I am a mouse running through a maze and can't get the cheese. The pain is horrible. I take so many pills as is between allergies, reflux, etc. that I have not tried over the counter stuff. I am at my witts end.
Lisa
Ulcerative Colitis (remission)
GERD Reflux taking Zantac
Recently low positive ana. Taking Leflunomide (arava).
Also taking Amitriptyline to prevent migraines.

Posted By : Lisabeans - 8/12/2017 6:29 AM
Rockson, Thank you for such am informative post. My cousin has EDS as well as fibro and other issues. I have asked my doctors but they say that since my skin is not elastic and I don't dislocate anything that I don't have it. For almost 3 years I was treated for an inflammatory issue but never diagnosed. I am so confused and lost in this world. I am going to read up on all the information you have provided me with. Were you diagnosed my a doctor?
Lisa
Ulcerative Colitis (remission)
GERD Reflux taking Zantac
Recently low positive ana. Taking Leflunomide (arava).
Also taking Amitriptyline to prevent migraines.

Posted By : Lisabeans - 8/15/2017 8:42 PM
My cousin didn't get diagnosed for years. She went to so many specialist. She found a great one in Arizona. She is convinced I have it since it runs in families. It is a shame that with all the technology out there, they still don't know how to diagnose us or or cure any one.
Lisa
Ulcerative Colitis (remission)
GERD Reflux taking Zantac
Recently low positive ana. Taking Leflunomide (arava).
Also taking Amitriptyline to prevent migraines.

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