Challenges of a Fibro Mom-to-Be: Realities of Family Planning with Chronic Illness

Challenges of a Fibro Mom-to-Be: Realities of Family Planning with Chronic Illness

My husband and I have decided the time is finally right to start family planning – or as right as it ever will be! For most (hetero) couples, this might be as simple as throwing out the birth control pill pack and spending more time in the bedroom. Of course, many otherwise healthy couples face fertility challenges that shouldn’t be minimized. But for anyone living with chronic illness, the starting point for trying to conceive may be far behind the average couple.

In my case, I live with fibromyalgia and pelvic pain, including (suspected) endometriosis. My monthly pain from the endometriosis – throbbing cramps – has worsened in the last few months –  up to 5-6 out of ten on the pain scale, 15 days a month. My OB-GYN and I decided the time was right to do a laparoscopy to officially diagnose the endometriosis and to remove the painful lesions, with the goal of reducing my overall pain. If my pain is reduced, this is my best chance to endure going off of the birth control pill, which has been my endometriosis treatment for several years. This is why the time will be right or us to try to conceive, or as soon as my laparoscopy is scheduled anyway. It’s strange that my pain has decided the timing instead of life circumstances, but that’s part of being a spoonie, for me at least! If I do have endometriosis, then I may also face fertility challenges, but we will not know this for awhile. I’ll cross that bridge when I get there.

The second significant challenge is that the medications I am currently on pose potential risks to a developing fetus. In these cases the risks are weighed against the benefits for the mother -being an exhausted, stressed, depressed, or in-pain Mom is not healthy for baby either. I have to completely come off of Lyrica, or pregabalin, (FDA approved for Fibro) because a recent study suggests a high risk of birth defects. I have found Lyrica helps with my autonomic nervous system symptoms during flares – goosebumps, chills, temperature intolerance, racing pulse, restless legs, head rushes, increased salivation, etc. Coming off a potent medication is difficult, and often involves worsening pain, sleep and mood, among other rebound effects. Because my laparoscopy is several months away, I am going to taper off my Lyrica very slowly, over three to four months. Hopefully this will reduce any rebound symptoms. I’m nervous about what my fibromyalgia will look like off of pregabalin.

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I have been taking a long release tramadol prescription called Tridural. My pain management team believes that the risks of tramadol for the baby – dependence on the opoid activity of tramadol  – are outweighed by the benefits to me in terms of pain control. However, I am on the highest Tridural dosage, which has to be taken continuously at the same dose, once a day. So, I am switching to short acting Tramadol, which you take every 4-6 hours. The goal is to take less Tramadol overall this way, because I can modulate the dose according to my daily pain level. On low pain days I take less, on high pain days I take more, with the hope of taking less overall. I recently made the switch and I am having a tough week. I have had difficulty sleeping, stomach upset, and low energy. This is mostly due to trouble getting used to how much or how often I should take the new tramadol. I like having more control however, and am hopeful the side effects will subside soon and I will find a good routine.

A further significant issue will be sleep. Having ten hours of sleep is the foundation for my functioning. A bad sleep causes all my fibro symptoms to flare.  I take a low dose of doxepin (Silenor)- a tricyclic antidepressant – to help me sleep, with occasional use of zopiclone for nights before important commitments. My doctors are still considering what my sleep prescriptions might be during pregnancy, but zopiclone is generally discouraged.  I take a number of supplements like 5htp, melatonin, magnesium and valerian, which have helped my insomnia a great deal. I will have to come off of all of these too. I am definitely anxious about this part of pregnancy! I am trying a cognitive behavioral therapy for insomnia program by using a book called Sink Into Sleep: A Step by Step Workbook for Reversing Insomnia by Dr. Judith Davidson. Conquering the anxiety I have about the consequences of a bad night’s sleep is definitely helping, by using relaxing sounds and guided relaxation tapes on apps like White Noise and Insight Timer. I take the perspective that all I can do is create the best environment for sleep at the present moment and worrying about what will happen tomorrow is unhelpful. This isn’t a perfect strategy but it is helping me to reduce night time wakings now and will hopefully help during pregnancy.

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Finally, in order to reduce the pain of pregnancy, I need to focus on strengthening and exercise as much as possible. I already have conditions like sciatica and SI Joint pain, which are common during pregnancy. I don’t have to tell you exercise is difficult during chronic illness! I have a wonderful physiotherapist (physical therapist) and athletic therapist who designed a gentle strengthening program for me. I found breaking it up into arms, legs and core exercises that I do on different days helps me to actually do my routine more regularly. However, the unpredictability of each day means it is hard to keep a regular exercise schedule. After three or four flare days in a row, it’s hard to get back into a routine. It’s hard to ever call it a routine! However I know that every day I put in now is going to help during nine months of pregnancy. But to top it off, I am concerned that the reduction in pain medication and associated side effects of tapering off are going to further complicate my exercise goals. It is going to take all of my determination to get stronger!

I hope to continue to share this journey on here. It helps me to process and plan for pregnancy. I also hope it raises awareness about the reality of family planning with chronic illness. Ultimately of course I hope it offers shared experiences and support for other hopeful fibro (or chronically ill) Moms-to-be (and Dads too)!

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